granix extreme bone pain

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benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Fri Sep 22, 2017 11:52 pm

Robino1 wrote:My oncologist said the mouth issues are caused by the 5fu. I can't even imagine how bad they would be without the Magic Mouthwash. I start using it at the first sign and stop when it goes away. I use about a half of a bottle each session.

I did ask if my body would get used to the 5FU and it would stop the mouth thing. She said it will happen during the whole treatment. For me it's just a minor bump in the road. It has never gotten painful but I did bring up the side effect one week after starting chemo with 5FU.

Found another side effect this morning. If I cry, it hurts right behind the eyeballs. Very painful


Yeah I haven't had pain, my concern is spread into infection because of being neutropenic.
Seems your ONC is right about the thrush being caused by the 5FU. Mine has subsided at day 8/9.
I seem to go through one entire bottle of Magic Mouthwash each cycle. Getting expensive at 52 bucks a bottle.
Three more sessions left so not too worried about 156 bucks if it keeps me good. Insurance wont cover it.

Another concern developed yesterday - slight rash or acne developed on my cheeks just above my trim cut beard and on my forehead.
I've googled this and it appears it can happen with 5FU. So far its not too bad, but some of the pics online are pretty bad looking.
This is the first I've seen of this side/effect - symptom. Hoping everything will go back to normal after I'm done with treatments.
Been putting aquaphor on it, not sure if I should be or not, but seems to help.

Shana wrote:October 24th - a great day to circle on your calendar! I hope the remaining weeks of chemo go smoothly and then you can take a deep breath and regain that sense of normal in your life. Cancer changes your life forever even when you're cured. I hope that my future normal will eventually be one that is cancer free and leave me with even more appreciation for life.

I think it's awesome how your son understands the importance of protecting your immune system. Flu and cold season never phased me much before but it sure does now. I have implemented a lot of the tips you shared to avoid germs and I thank you for that!

Glad to hear that feel well in the midst of nadir. I know what nadir means but not sure how to determine the time period. Is it different depending on the type of chemo and dosage? I've been spared the neuropathy so far, I wasn't on 5FU and Oxy long enough I guess. Side effects suck but worth it to eventually achieve NED. I keep reminding myself that when I get those occasional "moments".

Stay warm and well, hugs!


I only use digital calendars. Hard to circle that date, but can put a big reminder in there. :)

I'm glad you've found some of the tips I've listed as useful. Nadir time period can be different for people, but mostly Nadir comes around day 3-5 and stays until day 10-13 on Folfox/5FU.
Based upon my blood counts it seems my nadir lasts until day 13, as Zarxio has had little to no effect during my nadir on counts.

Yes side effects Suck totally agree with you :)

May we all achieve NED forever for life.
May your upcoming treatment find you well.

Hugs your way.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

Robino1
Posts: 117
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: granix extreme bone pain

Postby Robino1 » Sat Sep 23, 2017 7:22 am

I'm very lucky as my insurance has covered every med 100%.

I've just gotten to my halfway point and have gotten some acne. What sucks is I had one on the tip of my nose. I must have scrubbed too hard and now have a tiny scab there. Seems like it takes way longer for things to completely heal due to the Avastin.

As I keep reminding myself: this too shall pass. I'm alive and still fighting. :)
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended ab pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
9/30/17 CEA 109! Going down!

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Mon Sep 25, 2017 12:34 pm

Double post.
Last edited by benben on Mon Sep 25, 2017 12:35 pm, edited 1 time in total.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Mon Sep 25, 2017 12:35 pm

Robino1 wrote:I'm very lucky as my insurance has covered every med 100%.

I've just gotten to my halfway point and have gotten some acne. What sucks is I had one on the tip of my nose. I must have scrubbed too hard and now have a tiny scab there. Seems like it takes way longer for things to completely heal due to the Avastin.

As I keep reminding myself: this too shall pass. I'm alive and still fighting. :)



My Acne/Rash has mostly subsided with just some residual redness in spots.
I didn't pick it at all, knowing they could all become possible infections sites. One night I put aquaphor on it and while it soothed the mild burning sensation they had it seemed more pronounced the following day so I switched to neosporin on it. The next day was a noticable diminishing - did that for 2 days and didn't change much. Day4 I just showered and dried with towel. Day 5 pretty much gone but the redness. It was strange to get Acne, since during my adolescence I had very minimal single pimples come and go.

On Other Fronts: GOOD NEWS!!!

First I received my comprehensive genetic results back - all stating all 90 some tests came back normal - no mutation in the genes.
So this definitely seems to be an environmental causation to my cancer. Not sure if that has any good or bad effects on my prognosis.
But happy to know my son should not be effected genetically on my end.


Second - My Neutrophil count came back at 2.7 today - without any Zarxio for 2 weeks.
This made me very happy as I feel more safe about being around other people. Still going to avoid those with virus/infection etc.. but not as worried now about infection.
I'm celebrating by going out and sitting down at a Thai restaurant tonight. My taste buds seem to slowly be coming back, but for the most part everything tastes the same. But at least I'll be out and having someone else cook for me :) PARTY! RBC numbers are up too - just like 2-3% below the normal range. Platelets in normal range. RDW SD is still up about 20% beyond the normal range, hoping that will come down soon as I did not receive Zarxio today! First session since the first one that I'll not be neutropenic and no need for boosters :)
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

Robino1
Posts: 117
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: granix extreme bone pain

Postby Robino1 » Mon Sep 25, 2017 3:48 pm

benben wrote:
Robino1 wrote:I'm very lucky as my insurance has covered every med 100%.

I've just gotten to my halfway point and have gotten some acne. What sucks is I had one on the tip of my nose. I must have scrubbed too hard and now have a tiny scab there. Seems like it takes way longer for things to completely heal due to the Avastin.

As I keep reminding myself: this too shall pass. I'm alive and still fighting. :)



My Acne/Rash has mostly subsided with just some residual redness in spots.
I didn't pick it at all, knowing they could all become possible infections sites. One night I put aquaphor on it and while it soothed the mild burning sensation they had it seemed more pronounced the following day so I switched to neosporin on it. The next day was a noticable diminishing - did that for 2 days and didn't change much. Day4 I just showered and dried with towel. Day 5 pretty much gone but the redness. It was strange to get Acne, since during my adolescence I had very minimal single pimples come and go.

On Other Fronts: GOOD NEWS!!!

First I received my comprehensive genetic results back - all stating all 90 some tests came back normal - no mutation in the genes.
So this definitely seems to be an environmental causation to my cancer. Not sure if that has any good or bad effects on my prognosis.
But happy to know my son should not be effected genetically on my end.


Second - My Neutrophil count came back at 2.7 today - without any Zarxio for 2 weeks.
This made me very happy as I feel more safe about being around other people. Still going to avoid those with virus/infection etc.. but not as worried now about infection.
I'm celebrating by going out and sitting down at a Thai restaurant tonight. My taste buds seem to slowly be coming back, but for the most part everything tastes the same. But at least I'll be out and having someone else cook for me :) PARTY! RBC numbers are up too - just like 2-3% below the normal range. Platelets in normal range. RDW SD is still up about 20% beyond the normal range, hoping that will come down soon as I did not receive Zarxio today! First session since the first one that I'll not be neutropenic and no need for boosters :)


I'm doing anything except washing my face for the very minor acne spots. Just letting them run their course. ;)

And absolutely phenom news for you!! *doing the happy dance for ya!*

Enjoy your night out in public. :D
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended ab pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
9/30/17 CEA 109! Going down!

User avatar
Shana
Posts: 115
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Mon Sep 25, 2017 4:05 pm

Happy Dance x 2 for you, Ben

Enjoy your Thai Food and night out, you deserve it!

Great news about your WBC too!

Hugs for continued postive results :D
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Tue Sep 26, 2017 1:06 pm

Thanks Robino1 and Shana.
Hope all is going well with you.

I went to Thai last night, and while I couldn't really taste it like I have in the past I enjoyed getting out.
Today is treatment 10 day. My ONC took some wind out of my sails as my CEA level increased again.
Unfortunately since treatment 5 its been increasing a little bit at a time, starting at first treatment of 2.6 it dropped for a few sessions to 1.8 at lowest, but then starting climbing.
Currently sitting at 4.5 which isn't too significant and could be many things including just chemo reaction, but ONC wants me to scan before next session to ensure no mets have taken root.
So now scanxiety is setting in. Hopefully it all comes back clear and I can claim NED for time being. I came in for once without a mask (as no longer neutropenic) and feeling great.
But now, feeling knocked down a few notches. :(


Hugs.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

User avatar
Shana
Posts: 115
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Tue Sep 26, 2017 5:26 pm

benben wrote:Thanks Robino1 and Shana.
Hope all is going well with you.

I went to Thai last night, and while I couldn't really taste it like I have in the past I enjoyed getting out.
Today is treatment 10 day. My ONC took some wind out of my sails as my CEA level increased again.
Unfortunately since treatment 5 its been increasing a little bit at a time, starting at first treatment of 2.6 it dropped for a few sessions to 1.8 at lowest, but then starting climbing.
Currently sitting at 4.5 which isn't too significant and could be many things including just chemo reaction, but ONC wants me to scan before next session to ensure no mets have taken root.
So now scanxiety is setting in. Hopefully it all comes back clear and I can claim NED for time being. I came in for once without a mask (as no longer neutropenic) and feeling great.
But now, feeling knocked down a few notches. :(


Hugs.


Well shoot! I didn't want to read that but totally understand your mind set. I hope it's just normal fluctuation and you're on your way to NEDville! My oncologist is not testing my CEA anymore since it's too high to be of any use. I will get CT every 3 months unless warranted sooner based on bloodwork and how I am feeling. Next one is early December.

So glad to hear that you enjoyed going out for Thai food and happy to read that you're not neutropenic! I got good test results yesterday, no shots this week based on stable WBC of 4400, actually went up from 4200 after chemo on 9/18! I'm not sure what it means but I'll take it!

I started working out again with a trainer at my local gym, twice a week for half an hour. Although I am a member they are waiving my fees and offering free trainer as part of their wellness program for locals undergoing chemo. I was thrilled at the opportunity and proud of my club offering such a great service to the community for non-members too.

I was feeling down on Sunday and Monday, so much ahead of me treatment wise but met briefly with a social worker who gave me some perspective. I am taking her up on some emotional counseling. The good test results lifted my spirits too. I am mostly bored since my work was directly with people and I miss the interaction. I need to find a hobby so I'm not online shopping so much!

When is your scan scheduled? I'll be thinking positive thoughts and sending them in your direction. I can't help with scan anxiety, I think it's always going to be there even when you're NED.

Hugs!!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Thu Sep 28, 2017 3:36 pm

Shana wrote:Well shoot! I didn't want to read that but totally understand your mind set. I hope it's just normal fluctuation and you're on your way to NEDville! My oncologist is not testing my CEA anymore since it's too high to be of any use. I will get CT every 3 months unless warranted sooner based on bloodwork and how I am feeling. Next one is early December.

So glad to hear that you enjoyed going out for Thai food and happy to read that you're not neutropenic! I got good test results yesterday, no shots this week based on stable WBC of 4400, actually went up from 4200 after chemo on 9/18! I'm not sure what it means but I'll take it!

I started working out again with a trainer at my local gym, twice a week for half an hour. Although I am a member they are waiving my fees and offering free trainer as part of their wellness program for locals undergoing chemo. I was thrilled at the opportunity and proud of my club offering such a great service to the community for non-members too.

I was feeling down on Sunday and Monday, so much ahead of me treatment wise but met briefly with a social worker who gave me some perspective. I am taking her up on some emotional counseling. The good test results lifted my spirits too. I am mostly bored since my work was directly with people and I miss the interaction. I need to find a hobby so I'm not online shopping so much!

When is your scan scheduled? I'll be thinking positive thoughts and sending them in your direction. I can't help with scan anxiety, I think it's always going to be there even when you're NED.

Hugs!!



I have not got scan scheduled as of yet. I will be calling soon since I haven't heard from them. I would imagine I'll attempt to schedule on the 6th to be furthest out of Nadir I can be
as the 7th I have another blood draw, possible zarxio if needed (hopefully not). Then treatment 11 on the 8th. Hoping they find nothing on scan and this is just a boost from Chemo or dying of possible cancer cells. 4.8 CEA is not drastically high, but Onc is concerned since it has climbed a little past 4/5 sessions so we are getting the scan a few weeks earlier than normal. As he usually scans about 1-2 weeks after last treatment.

Good to hear you are getting some workouts in. That should help energy levels provided its not overdone. I keep my walking up and little yoga and barbells, but cut down a lot since every time I increase the load seems to cause some sort of strain. But energy levels due increase.

I'm glad you're getting some consultation with a social worker. They can be helpful. Overall my mood is up, and praying the CEA climb is nothing. I was disconnected from 5FU pump 5 hours early today cause it started spitting out errors about no clamp. I guess it injected everything into me faster than it should have as the nurse said I got pretty much everything. I felt tired after getting back home and took a 2 hour nap. Been working since I woke up a couple hours ago.

Hope you're doing well. I will post my scan date when I get it.
I like the addition of your Avatar :). You're looking good. Keep on keeping on.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

User avatar
Shana
Posts: 115
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Fri Sep 29, 2017 8:38 pm

benben wrote:
Shana wrote:Well shoot! I didn't want to read that but totally understand your mind set. I hope it's just normal fluctuation and you're on your way to NEDville! My oncologist is not testing my CEA anymore since it's too high to be of any use. I will get CT every 3 months unless warranted sooner based on bloodwork and how I am feeling. Next one is early December.

So glad to hear that you enjoyed going out for Thai food and happy to read that you're not neutropenic! I got good test results yesterday, no shots this week based on stable WBC of 4400, actually went up from 4200 after chemo on 9/18! I'm not sure what it means but I'll take it!

I started working out again with a trainer at my local gym, twice a week for half an hour. Although I am a member they are waiving my fees and offering free trainer as part of their wellness program for locals undergoing chemo. I was thrilled at the opportunity and proud of my club offering such a great service to the community for non-members too.

I was feeling down on Sunday and Monday, so much ahead of me treatment wise but met briefly with a social worker who gave me some perspective. I am taking her up on some emotional counseling. The good test results lifted my spirits too. I am mostly bored since my work was directly with people and I miss the interaction. I need to find a hobby so I'm not online shopping so much!

When is your scan scheduled? I'll be thinking positive thoughts and sending them in your direction. I can't help with scan anxiety, I think it's always going to be there even when you're NED.

Hugs!!



I have not got scan scheduled as of yet. I will be calling soon since I haven't heard from them. I would imagine I'll attempt to schedule on the 6th to be furthest out of Nadir I can be
as the 7th I have another blood draw, possible zarxio if needed (hopefully not). Then treatment 11 on the 8th. Hoping they find nothing on scan and this is just a boost from Chemo or dying of possible cancer cells. 4.8 CEA is not drastically high, but Onc is concerned since it has climbed a little past 4/5 sessions so we are getting the scan a few weeks earlier than normal. As he usually scans about 1-2 weeks after last treatment.

Good to hear you are getting some workouts in. That should help energy levels provided its not overdone. I keep my walking up and little yoga and barbells, but cut down a lot since every time I increase the load seems to cause some sort of strain. But energy levels due increase.

I'm glad you're getting some consultation with a social worker. They can be helpful. Overall my mood is up, and praying the CEA climb is nothing. I was disconnected from 5FU pump 5 hours early today cause it started spitting out errors about no clamp. I guess it injected everything into me faster than it should have as the nurse said I got pretty much everything. I felt tired after getting back home and took a 2 hour nap. Been working since I woke up a couple hours ago.

Hope you're doing well. I will post my scan date when I get it.
I like the addition of your Avatar :). You're looking good. Keep on keeping on.


Hi Ben,

Good to hear that you are staying positive. I believe having a good attitude is beneficial for all of us in all aspects of life.

I'm never tired after chemo, the steroids make me feel like I could hit a home run! Wednesday is my veg day as the steroids wear off and I'm pretty much back to normal by Thursday evening. I even made it to Trivia night last night and we came in 3rd after trailing in 5th. Pats myself of the back for guessing the final question on the first set of clues.

I'm sorry that your CEA has you concerned, hopefully it's not an issue but best to check sooner than later (my new motto!) My CEA is off the charts so oncologist isn't using it as a marker anymore.

I am going to get my bloodwork done tomorrow even though next week is my off week. I like to keep tabs on my WBC and I am curious what the numbers are going to be without Zarxio. I was going to visit my dad tomorrow but he called to tell me that my niece and her 2 kids have colds and are going to be visiting tomorrow too. I'm disappointed but can't take the chance of exposure so I'll arrange to visit another time.

Thanks, glad you like my avatar. It was taken in Yountville 2 weeks ago while celebrating my best friend's birthday. They brought us dessert on the house so I had to force myself to eat some! It felt good to get out and do "normal" things again which I used to take for granted.

I hope your test results are awesomely good and you can zip through the remaining sessions without Zarxio. You've done everything you needed to do and now it's time to reap the benefits!

Hugs!!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Wed Oct 04, 2017 7:45 pm

Shana wrote:Hi Ben,

Good to hear that you are staying positive. I believe having a good attitude is beneficial for all of us in all aspects of life.

I'm never tired after chemo, the steroids make me feel like I could hit a home run! Wednesday is my veg day as the steroids wear off and I'm pretty much back to normal by Thursday evening. I even made it to Trivia night last night and we came in 3rd after trailing in 5th. Pats myself of the back for guessing the final question on the first set of clues.

I'm sorry that your CEA has you concerned, hopefully it's not an issue but best to check sooner than later (my new motto!) My CEA is off the charts so oncologist isn't using it as a marker anymore.

I am going to get my bloodwork done tomorrow even though next week is my off week. I like to keep tabs on my WBC and I am curious what the numbers are going to be without Zarxio. I was going to visit my dad tomorrow but he called to tell me that my niece and her 2 kids have colds and are going to be visiting tomorrow too. I'm disappointed but can't take the chance of exposure so I'll arrange to visit another time.

Thanks, glad you like my avatar. It was taken in Yountville 2 weeks ago while celebrating my best friend's birthday. They brought us dessert on the house so I had to force myself to eat some! It felt good to get out and do "normal" things again which I used to take for granted.

I hope your test results are awesomely good and you can zip through the remaining sessions without Zarxio. You've done everything you needed to do and now it's time to reap the benefits!

Hugs!!


Thanks Shana, you're very kind :)

I agree with you on staying positive. Although I think its even better to stay "Authentic". 25 years of meditation has helped me to try and see the bright side of every coin.
So generally I'm quite positive even in the face of grim situations. 25 years ago I suffered depression and anxiety. Interestingly enough I have little of either now. I contribute meditation for that. I do see some anxiety about symptoms and possible met/recurrence - but overall I'm living life with as much joy as I can.

I got hit pretty hard with sleepiness this last session. Also low temperatures like 94-95 a couple of times. ONC said not to worry about it unless my blood pressure either decreases a lot or increases a lot. So far blood pressure has been mostly stable with exception of first couple days after treatment it was running on the low side. I think some of this, if not all, is related to the pump failure that kicked in a lot of extra 5FU too early. I really hope that doesn't happen again. Yesterday my temps went into 96-97 range and feeling much more energy. I worked 12 hours yesterday, almost all physical - again today feeling pretty good with temps just under 97. I worked about 9 hours today and am finally caught up. Over 11k steps each day from work alone. Finally getting some down time. I'm scheduled for CT-SCAN on OCT 20th. Hoping to be able to claim NED at that point.

Sorry to hear you didn't get a chance to visit your dad, but its always best to play it safe.
How did your blood work numbers turn out? Hope they were still up and no longer needing the zarxio.

That pic was taken 2 weeks ago? That's impressive - you're looking good in the midst of it all.
For me, chemo seems to have aged me a few years. While before I looked like late 20's early 30's. Just a few months prior to prognosis I was called out as a vampire - since I hadn't really aged physically in about 15 years. I'm looking closer to my age now, but still not quite looking 44. But I'm on the mend :) I shaved my hair after 2 sessions of folfox as it was falling out pretty fast. It's been growing fast now that I've stopped oxaliplatin. Even noticing some new growth - so hopefully my thick head of I'm feeling really good now as my energy levels keep increasing. My skin color is coming back - was extremely pale for a bit. So things keep looking up.

I go in Monday for more blood work - I think my counts will still be in the normal range after coming out of Nadir. Maybe even RBC which were just below normal are back in normal range.
Just 2 more sessions to go then wait and watch comes into play provided my CT SCANS - SCREAM NED!

Keep moving forward.
Hugs and well wishes.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

User avatar
Shana
Posts: 115
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Thu Oct 05, 2017 10:24 pm

benben wrote:
Shana wrote:Hi Ben,

Good to hear that you are staying positive. I believe having a good attitude is beneficial for all of us in all aspects of life.

I'm never tired after chemo, the steroids make me feel like I could hit a home run! Wednesday is my veg day as the steroids wear off and I'm pretty much back to normal by Thursday evening. I even made it to Trivia night last night and we came in 3rd after trailing in 5th. Pats myself of the back for guessing the final question on the first set of clues.

I'm sorry that your CEA has you concerned, hopefully it's not an issue but best to check sooner than later (my new motto!) My CEA is off the charts so oncologist isn't using it as a marker anymore.

I am going to get my bloodwork done tomorrow even though next week is my off week. I like to keep tabs on my WBC and I am curious what the numbers are going to be without Zarxio. I was going to visit my dad tomorrow but he called to tell me that my niece and her 2 kids have colds and are going to be visiting tomorrow too. I'm disappointed but can't take the chance of exposure so I'll arrange to visit another time.

Thanks, glad you like my avatar. It was taken in Yountville 2 weeks ago while celebrating my best friend's birthday. They brought us dessert on the house so I had to force myself to eat some! It felt good to get out and do "normal" things again which I used to take for granted.

I hope your test results are awesomely good and you can zip through the remaining sessions without Zarxio. You've done everything you needed to do and now it's time to reap the benefits!

Hugs!!


Thanks Shana, you're very kind :)

I agree with you on staying positive. Although I think its even better to stay "Authentic". 25 years of meditation has helped me to try and see the bright side of every coin.
So generally I'm quite positive even in the face of grim situations. 25 years ago I suffered depression and anxiety. Interestingly enough I have little of either now. I contribute meditation for that. I do see some anxiety about symptoms and possible met/recurrence - but overall I'm living life with as much joy as I can.

I got hit pretty hard with sleepiness this last session. Also low temperatures like 94-95 a couple of times. ONC said not to worry about it unless my blood pressure either decreases a lot or increases a lot. So far blood pressure has been mostly stable with exception of first couple days after treatment it was running on the low side. I think some of this, if not all, is related to the pump failure that kicked in a lot of extra 5FU too early. I really hope that doesn't happen again. Yesterday my temps went into 96-97 range and feeling much more energy. I worked 12 hours yesterday, almost all physical - again today feeling pretty good with temps just under 97. I worked about 9 hours today and am finally caught up. Over 11k steps each day from work alone. Finally getting some down time. I'm scheduled for CT-SCAN on OCT 20th. Hoping to be able to claim NED at that point.

Sorry to hear you didn't get a chance to visit your dad, but its always best to play it safe.
How did your blood work numbers turn out? Hope they were still up and no longer needing the zarxio.

That pic was taken 2 weeks ago? That's impressive - you're looking good in the midst of it all.
For me, chemo seems to have aged me a few years. While before I looked like late 20's early 30's. Just a few months prior to prognosis I was called out as a vampire - since I hadn't really aged physically in about 15 years. I'm looking closer to my age now, but still not quite looking 44. But I'm on the mend :) I shaved my hair after 2 sessions of folfox as it was falling out pretty fast. It's been growing fast now that I've stopped oxaliplatin. Even noticing some new growth - so hopefully my thick head of I'm feeling really good now as my energy levels keep increasing. My skin color is coming back - was extremely pale for a bit. So things keep looking up.

I go in Monday for more blood work - I think my counts will still be in the normal range after coming out of Nadir. Maybe even RBC which were just below normal are back in normal range.
Just 2 more sessions to go then wait and watch comes into play provided my CT SCANS - SCREAM NED!

Keep moving forward.
Hugs and well wishes.



Hi Ben,

Good to hear from you and glad that you're doing well for the most part. I never thought of being authentic as a state of mind if that's what you meant but I like it. My friends used to call me "Pollyanna" because of my overly optimistic attitude back in the day. You can google that, it's an old movie starting Hayley Mills when she was a child. I'm always looking for the rainbow I guess and now the Pot of Gold is NED!

No Zarxio this last session, yippee! My WBC stayed in the 4.0-4.5 range even after 2 treatments. I was thrilled to see that my bloodwork looked even better than the previous week. My HGB and RBC are slightly down but not enough to concern me yet. I'll be getting bloodwork again on Saturday for my Monday infusion. Feeling pretty good overall except for some consistent joint pain which I am thinking is related to Irinotecan. It's my ankles and heels, my knees and my fingers. I loosen up with exercise but it takes awhile to get the kinks out especially after driving a distance or sitting for awhile but it's tolerable.

You're fortunate to be able to tolerate your chemo regimen, it's probably the most effective chemo for CRC. I will be looking forward to hearing positive news from you after your upcoming scan! I ended up with an allergy to one or more of the components which is what put me in and out of the hospital numerous times the first 5 months of this year. I lost a lot of treatment time due to the neutropenia, infection and colitis but I'm back on track now and grateful!

I took advantage of my off week and visited my dentist, thankfully no damages after missing a year of preventive care! It's easy to forget about the other parts of our bodies when we're focused on chemo and cancer. It's pretty amazing how surprised people are when they see me looking so "normal and well". The wig helps (I miss my own hair but oh well) and of course a girl's best friend aka makeup helps too! I took selfies of myself during my ordeal earlier this year, I deleted some of them because they were scary bad. I kept some to remind me how far I have come from some very low points. Like you, I don't feel depressed but at times I do feel a sense of loss so hopefully my counseling session will help me address that issue.

Hugs and Rainbows!!!

Shana
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Mon Oct 09, 2017 11:53 am

Shana wrote:
Hi Ben,

Good to hear from you and glad that you're doing well for the most part. I never thought of being authentic as a state of mind if that's what you meant but I like it. My friends used to call me "Pollyanna" because of my overly optimistic attitude back in the day. You can google that, it's an old movie starting Hayley Mills when she was a child. I'm always looking for the rainbow I guess and now the Pot of Gold is NED!

No Zarxio this last session, yippee! My WBC stayed in the 4.0-4.5 range even after 2 treatments. I was thrilled to see that my bloodwork looked even better than the previous week. My HGB and RBC are slightly down but not enough to concern me yet. I'll be getting bloodwork again on Saturday for my Monday infusion. Feeling pretty good overall except for some consistent joint pain which I am thinking is related to Irinotecan. It's my ankles and heels, my knees and my fingers. I loosen up with exercise but it takes awhile to get the kinks out especially after driving a distance or sitting for awhile but it's tolerable.

You're fortunate to be able to tolerate your chemo regimen, it's probably the most effective chemo for CRC. I will be looking forward to hearing positive news from you after your upcoming scan! I ended up with an allergy to one or more of the components which is what put me in and out of the hospital numerous times the first 5 months of this year. I lost a lot of treatment time due to the neutropenia, infection and colitis but I'm back on track now and grateful!

I took advantage of my off week and visited my dentist, thankfully no damages after missing a year of preventive care! It's easy to forget about the other parts of our bodies when we're focused on chemo and cancer. It's pretty amazing how surprised people are when they see me looking so "normal and well". The wig helps (I miss my own hair but oh well) and of course a girl's best friend aka makeup helps too! I took selfies of myself during my ordeal earlier this year, I deleted some of them because they were scary bad. I kept some to remind me how far I have come from some very low points. Like you, I don't feel depressed but at times I do feel a sense of loss so hopefully my counseling session will help me address that issue.

Hugs and Rainbows!!!

Shana


I'm familiar with the term Pollyanna as it was used in my theatre group back in HS. There were a few girls that received that term:)
It seemed negative at the time, but I don't mind the Pollyanna's of the world. Sort of like a bright flower or as you say Rainbow :).
May you find that pot of Gold. Glad you are high in counts to not have to receive injections. Yeah I here Chemo can be bad on the enamel and teeth in general.
I brush after I eat anything now - and follow with a rinse, commonly magic mouthwash, which reminds me I need to call and get a refill.

Good news again today. Counts are still rebounding without any injections. Comple WBC 5.79 and ANC 3.14. RBC is only .02 below the low normal of 4.2
Platelets still at 165 - Good. RDW SD coming down to near normal. I won't receive CEA results until later today. Hoping they are down too.
Overall, I continue to get more back to myself each day. More energy, more hair, more things I can do. I still take it easy during Nadir, but feel like I'll be ok as my counts generally dip about 1k during that period and I'm well into mid normal range on the ANC.

So tomorrow is treatment 11 for me:) Looking forward to 12. Hoping my scan results come back clean on the 20th. Then I can start moving forward with my investment ideas and move into wait and watch mode.

May all the rainbows lead us all to our own individual Pots of Gold!
Hugs.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

User avatar
Shana
Posts: 115
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Mon Oct 09, 2017 4:29 pm

benben wrote:I'm familiar with the term Pollyanna as it was used in my theatre group back in HS. There were a few girls that received that term:)
It seemed negative at the time, but I don't mind the Pollyanna's of the world. Sort of like a bright flower or as you say Rainbow :).
May you find that pot of Gold. Glad you are high in counts to not have to receive injections. Yeah I here Chemo can be bad on the enamel and teeth in general.
I brush after I eat anything now - and follow with a rinse, commonly magic mouthwash, which reminds me I need to call and get a refill.

Good news again today. Counts are still rebounding without any injections. Comple WBC 5.79 and ANC 3.14. RBC is only .02 below the low normal of 4.2
Platelets still at 165 - Good. RDW SD coming down to near normal. I won't receive CEA results until later today. Hoping they are down too.
Overall, I continue to get more back to myself each day. More energy, more hair, more things I can do. I still take it easy during Nadir, but feel like I'll be ok as my counts generally dip about 1k during that period and I'm well into mid normal range on the ANC.

So tomorrow is treatment 11 for me:) Looking forward to 12. Hoping my scan results come back clean on the 20th. Then I can start moving forward with my investment ideas and move into wait and watch mode.

May all the rainbows lead us all to our own individual Pots of Gold!
Hugs.


Hi Ben,

You're almost there, Ben. Great bloodwork numbers too! I never imagined knowing so much about blood chemistry. Soon you'll be ringing that bell and be showered with gold and sliding down rainbows... okay maybe that was a bit too much haha! I am a bit of a Pollyanna but only to a point, there's a cynical side of me too that shakes itself on occasion. Sometimes that's a good thing because it keeps me smart and savvy, I just need to keep it from bumming me out. So far so good most of the time!

My Chemo was pushed to tomorrow since all the roads I needed to take were either closed or congested due to the firestorm raging here. I'm in Sonoma, just a few miles from downtown plaza. It's very smokey and hazy here and fires are raging north of us, east of us and possibly south of us too. There are too many to keep track of, Santa Rosa has been hit very hard and it's shocking because it's a large urban area. Just tragic! Several large wineries are gone,, they evacuated two of the hospitals north of us. Marin General which is next door to my cancer center has taken a lot of those patients along with other neighboring hospitals. I felt so sorry watching these patients being wheeled out to waiting ambulances or buses depending on their needs. I've been awake since 1am, the fires started late yesterday evening and grew out of control faster than firefighters anticipated.

I've tried to find something to take my mind off of chemo and cancer but this wasn't what I had in mind! I pray for everyone to be safe, that's all that matters now. Wednesday is the "Sailing Heals" event at the San Francisco Yacht Club. It's a yearly event where local cancer patients and a guest are invited to lunch followed by sailing on the SF Bay. I'm usually buzzing for 2 days after chemo so shouldn't be a problem.

Hugs and Rainbows back atcha :D
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Tue Oct 10, 2017 12:41 pm

Shana wrote:Hi Ben,

You're almost there, Ben. Great bloodwork numbers too! I never imagined knowing so much about blood chemistry. Soon you'll be ringing that bell and be showered with gold and sliding down rainbows... okay maybe that was a bit too much haha! I am a bit of a Pollyanna but only to a point, there's a cynical side of me too that shakes itself on occasion. Sometimes that's a good thing because it keeps me smart and savvy, I just need to keep it from bumming me out. So far so good most of the time!

My Chemo was pushed to tomorrow since all the roads I needed to take were either closed or congested due to the firestorm raging here. I'm in Sonoma, just a few miles from downtown plaza. It's very smokey and hazy here and fires are raging north of us, east of us and possibly south of us too. There are too many to keep track of, Santa Rosa has been hit very hard and it's shocking because it's a large urban area. Just tragic! Several large wineries are gone,, they evacuated two of the hospitals north of us. Marin General which is next door to my cancer center has taken a lot of those patients along with other neighboring hospitals. I felt so sorry watching these patients being wheeled out to waiting ambulances or buses depending on their needs. I've been awake since 1am, the fires started late yesterday evening and grew out of control faster than firefighters anticipated.

I've tried to find something to take my mind off of chemo and cancer but this wasn't what I had in mind! I pray for everyone to be safe, that's all that matters now. Wednesday is the "Sailing Heals" event at the San Francisco Yacht Club. It's a yearly event where local cancer patients and a guest are invited to lunch followed by sailing on the SF Bay. I'm usually buzzing for 2 days after chemo so shouldn't be a problem.

Hugs and Rainbows back atcha :D


Hey Shana, I read about those fires shortly after they were started. Rumor is they were started by an arson or arson(s). It's quite terrible.
I thought it was interesting as we just got our air quality back to normal here, and now you're getting what I experienced here for over a month.
I hope you remain safe. Looks like you are quite close to Santa Rosa. Stay indoors. Hopefully it doesn't delay your treatment further. Gotta head to my infusion of leucovorin followed by 5FU bolus infusion and lastly pump hook up. I asked nurse if they fixed the pump from last time as I was injected too quickly and experienced fatigue and low temps. Same nurse that disconnected me. She had forgotten all about it. I certainly hope it's working now or I get a new pump. I didn't care for the worries of the side effects that weren't normally there.

I hope the smoke clears and doesn't interfere with your Wednesday plans to head to the Yacht club. That sounds like a great event with some good excitement.

Happy sailing - sounds like a rainbow for the soul!

Hugs.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC


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