granix extreme bone pain

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benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Sat Sep 09, 2017 9:54 am

Lee wrote:
I suspect you are okay. When I was diagnosed, FOLFOX was still experimental (2004). I was given 30-50% chance of being alive in 5 years (depending upon who you talked to). FOLFOX (and Avastin) were a game changer then. I got the full 12 cycles because I was young and healthy (except for the cancer). I suffer some of the side effect today, butt glad to be alive.

30 years prior to my diagnosis, a good friend of mine, her dad was diagnosed with rectal cancer via exploratory surgery (no scopes then), 5FU was the only chemo for colon cancer. He died 6 months after diagnoses. He was only 46. You might be one of those people who see a "cure for cancer" in your life time. I truly believe we on getting closer to it.

All the best,

Lee


Well your odds were probably closer to 50% given all the new studies about surgery and chemo statistics.
It's great you've been NED for so long chances of recurrence are slim to none at this point. You're quite an asset to this board.
So the 12 treatments did you well. Did you suffer from Neutropenia at all? What are your long term symptoms/side effects?
I had an uncle who had cancer of the esophagus that did chemo about 20 years or so ago and passed within a month of diagnosis.
Also my Great grandmother and her son, my great uncle I suppose, both developed colon cancer. My great grandmother refused treatment and passed within a year in her early 60's.
My great Uncle, did a resection of tumor only and lived to his late 70's. His wife of 50+ years had passed 6 months before he did. They were very close and most likely her death was a big reason for his as he started to fail to thrive after her passing. I was never told of there diagnosis until after I was diagnosed. :( - otherwise I'd have demanded scopes like 10 years ago after bleeding became routine instead of taking a GI that gave me an anoscopes word that it was most likely just a hemoroid and anal fissure.

I certainly hope Humanity will see a cure for this disease as well as all disease and even aging itself.
I absolutely love life, existence, consciousness, and everything that we can learn/experience in it.
I'm one of the dreamers who see humanity expanding onto other planets and hopefully even beyond in the future.
As for cancer, science is making great progress with not only chemotherapies, but immunotherapy and nanobot-therapies.
I really like progression of both of immuno and nano therapies - until then chemo seems to be a great reducer of recurrence - especially in CRC.
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Sat Sep 09, 2017 9:55 am

benben wrote:
Lee wrote:
I suspect you are okay. When I was diagnosed, FOLFOX was still experimental (2004). I was given 30-50% chance of being alive in 5 years (depending upon who you talked to). FOLFOX (and Avastin) were a game changer then. I got the full 12 cycles because I was young and healthy (except for the cancer). I suffer some of the side effect today, butt glad to be alive.

30 years prior to my diagnosis, a good friend of mine, her dad was diagnosed with rectal cancer via exploratory surgery (no scopes then), 5FU was the only chemo for colon cancer. He died 6 months after diagnoses. He was only 46. You might be one of those people who see a "cure for cancer" in your life time. I truly believe we on getting closer to it.

All the best,

Lee


Well your odds were probably closer to 50% given all the new studies about surgery and chemo statistics.
It's great you've been NED for so long chances of recurrence are slim to none at this point. You're quite an asset to this board.
So the 12 treatments did you well. Did you suffer from Neutropenia at all? What are your long term symptoms/side effects?
I had an uncle who had cancer of the esophagus that did chemo about 20 years or so ago and passed within a month of diagnosis.
Also my Great grandmother and her son, my great uncle I suppose, both developed colon cancer. My great grandmother refused treatment and passed within a year in her early 60's.
My great Uncle, did a resection of tumor only and lived to his late 70's. His wife of 50+ years had passed 6 months before he did. They were very close and most likely her death was a big reason for his as he started to fail to thrive after her passing. I was never told of their diagnosis until after I was diagnosed. :( - otherwise I'd have demanded scopes like 10 years ago after bleeding became routine instead of taking a GI that gave me an anoscopes word that it was most likely just a hemoroid and anal fissure.

I certainly hope Humanity will see a cure for this disease as well as all disease and even aging itself.
I absolutely love life, existence, consciousness, and everything that we can learn/experience in it.
I'm one of the dreamers who see humanity expanding onto other planets and hopefully even beyond in the future.
As for cancer, science is making great progress with not only chemotherapies, but immunotherapy and nanobot-therapies.
I really like progression of both of immuno and nano therapies - until then chemo seems to be a great reducer of recurrence - especially in CRC.
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: granix extreme bone pain

Postby Lee » Sat Sep 09, 2017 2:11 pm

benben wrote:Well your odds were probably closer to 50% given all the new studies about surgery and chemo statistics.
It's great you've been NED for so long chances of recurrence are slim to none at this point. You're quite an asset to this board.
So the 12 treatments did you well. Did you suffer from Neutropenia at all? What are your long term symptoms/side effects?
I had an uncle who had cancer of the esophagus that did chemo about 20 years or so ago and passed within a month of diagnosis.
Also my Great grandmother and her son, my great uncle I suppose, both developed colon cancer. My great grandmother refused treatment and passed within a year in her early 60's.
My great Uncle, did a resection of tumor only and lived to his late 70's. His wife of 50+ years had passed 6 months before he did. They were very close and most likely her death was a big reason for his as he started to fail to thrive after her passing. I was never told of there diagnosis until after I was diagnosed. :( - otherwise I'd have demanded scopes like 10 years ago after bleeding became routine instead of taking a GI that gave me an anoscopes word that it was most likely just a hemoroid and anal fissure.

I certainly hope Humanity will see a cure for this disease as well as all disease and even aging itself.
I absolutely love life, existence, consciousness, and everything that we can learn/experience in it.
I'm one of the dreamers who see humanity expanding onto other planets and hopefully even beyond in the future.
As for cancer, science is making great progress with not only chemotherapies, but immunotherapy and nanobot-therapies.
I really like progression of both of immuno and nano therapies - until then chemo seems to be a great reducer of recurrence - especially in CRC.


Thank you! Yes in hind sight, my odds were closer to 50% and even higher.

I try to help here because this site was not around when I was going through treatment. Sure wish it was. There were a few other sites, butt not with the same knowledge this site offers. It is a great place for those just starting the journey. Cancer can be a very scary lonely road to travel with no place to turn to, butt this site make that road a lot less lonely and scary. Here you have people who get what you are feeling or going through. I did not have that same level of support when going through treatment.

Yes most people a few generations back did not talk about colon cancer or breast cancer. It was okay to have lung cancer, butt colon and breast were taboo. Thank goodness attitudes are changing. I remember when Betty Ford (wife of president Gerald Ford) came out and said she was battling breast cancer. It was almost a scandal. I believe Ronald Reagan was the first president to openly talk about getting colonoscopies.

I have some neuropathy in my hands and feet. It could be worse, I know some people have it bad. I also have nerve damage in my ears as a result of chemo. That is the worst with 50% loss in one ear. A few years back I was diagnosed with psoriasis, guess it's a side effect of the Oxi.

For me radiation was the worst. I suffer far more side effect there. I have a permanent colostomy because of the damage to my rectal muscles. I have a 100% clot in my hip area due to radiation damage. Because I've always been a walker most of my adult life, my body worked around it. I have about 80 to 85% blood flow in that leg today. While it is there, I do not feel the effects (pain) because of all the walking I do. And I deal with female issues thanks to radiation. Butt I am alive and I got to raise my kids. Very grateful for that one.

The best news, cancer is not the death sentence it once used to be.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Mon Sep 11, 2017 12:26 pm

Lee wrote:I have some neuropathy in my hands and feet. It could be worse, I know some people have it bad. I also have nerve damage in my ears as a result of chemo. That is the worst with 50% loss in one ear. A few years back I was diagnosed with psoriasis, guess it's a side effect of the Oxi.

For me radiation was the worst. I suffer far more side effect there. I have a permanent colostomy because of the damage to my rectal muscles. I have a 100% clot in my hip area due to radiation damage. Because I've always been a walker most of my adult life, my body worked around it. I have about 80 to 85% blood flow in that leg today. While it is there, I do not feel the effects (pain) because of all the walking I do. And I deal with female issues thanks to radiation. Butt I am alive and I got to raise my kids. Very grateful for that one.


Sorry to hear about your permanent side effects. Sounds like you are managing pretty well though, that's good - and yes best of all you were around to raise your children - and now around to enjoy the rest of life. :)


I had CBC's today and unfortunately ANC is still low at .95 - now that's much better than last few treatments though with .42-.77 even with Zarxio shots. So far I had no shots this session.
But, I was given another zarxio today. Hopefully will boost me up and won't need any more in the future. Crossing fingers. I guess the 5FU and lingering OXI still suppressing the WBC a bit.
Total WBC was just under low end of normal at 3500. Platelets are back to normal - that's good. Total RBC just a little under normal. Seems like things are getting closer to normal bloodwork. Maybe in two weeks. Came home and dosed a 25mg CBD in case any bone pain comes on. Usually only get it about injection number 3, but being proactive as hitting the pain receptors with pain reduction prior to the onset really helps keep it in check.

I hope you're still doing well @Shana - 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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

User avatar
Shana
Posts: 146
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Mon Sep 11, 2017 1:52 pm

Hi Ben and Lee!

I am doing much better after these last two rounds, this is my off week so taking it easy and enjoying the novelty of no appointments.

I'm replying to both of you because you both inspire me so much!

Lee,
You are a ray of sunshine and hope to all of us who are new here. Your experience and willingness to frankly share your journey with CRC are such a gift. I'm sorry that you have long term side effects but just the fact that you're 10 years NED is remarkable, wishing you NED forever :)

Ben,
You are a rock and I feel your strength from afar as you battle this disease. I feel really good about our futures and I hope we see the amazing progress being made in cancer research result in more of us becoming NED and living out our lives as they were meant to be. Yeah for Zarxio! So far no bone pain again after three shots :)

I believe all this is possible and we just need to hang in there!

Wishing you both an awesome week. The power of positivity feels good, pass it on!

Hugs,

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
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Mon Sep 11, 2017 5:37 pm

Shana wrote:Hi Ben and Lee!

I am doing much better after these last two rounds, this is my off week so taking it easy and enjoying the novelty of no appointments.

I'm replying to both of you because you both inspire me so much!

Ben,
You are a rock and I feel your strength from afar as you battle this disease. I feel really good about our futures and I hope we see the amazing progress being made in cancer research result in more of us becoming NED and living out our lives as they were meant to be. Yeah for Zarxio! So far no bone pain again after three shots :)

I believe all this is possible and we just need to hang in there!

Wishing you both an awesome week. The power of positivity feels good, pass it on!

Hugs,

Shana


Thank you Shana. You enjoy the HECK out of your week off. You deserve it.
Glad you never experienced the bone pain. Sounds like you won't at all and that's great!
So far no bone pain for me - usually sets in about now if its going to happen - but that's usually #3 or #4 before the pain creeps in.
Hope the 1 shot is enough to boost me to treatment tomorrow. Smoke has cleared here and took a nice 2 mile walk.
Good to walk and take in the sun and some nature.

Now get back to that enjoyment with full vigor :)
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: granix extreme bone pain

Postby Lee » Mon Sep 11, 2017 6:33 pm

Shana wrote:Hi Ben and Lee!
Lee,
You are a ray of sunshine and hope to all of us who are new here. Your experience and willingness to frankly share your journey with CRC are such a gift. I'm sorry that you have long term side effects but just the fact that you're 10 years NED is remarkable, wishing you NED forever :)

Wishing you both an awesome week. The power of positivity feels good, pass it on!

Hugs,

Shana


Ah sucks, thank you so much, that was so sweet. I too hope you have an awesome week.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Tue Sep 12, 2017 5:01 pm

Well the one shot did it. ANC jumped from .95 to 6.9.
So getting filled with Luecovorin as I type. No bone pain resulted this single shot - just some bone lethargy and muscle lethargy.
So plan is for last 3 treatements test day prior and injection if needed. Be nice to see WBC come up on its own this next time, but single shot isn't bad.
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

User avatar
Shana
Posts: 146
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Tue Sep 12, 2017 6:47 pm

benben wrote:Well the one shot did it. ANC jumped from .95 to 6.9.
So getting filled with Luecovorin as I type. No bone pain resulted this single shot - just some bone lethargy and muscle lethargy.
So plan is for last 3 treatements test day prior and injection if needed. Be nice to see WBC come up on its own this next time, but single shot isn't bad.



Great news! That's an amazing jump isn't it? It's nice to have an "end date" to look forward to. Now go and get yourself some Häagen-Daz!

Hugs,

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
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: granix extreme bone pain

Postby Lee » Tue Sep 12, 2017 6:49 pm

AWESOME!

When you think about it, we might be a bit crazy around here (warped). Happy to get chemo :shock: :shock: :mrgreen:

Keep up the awesome progress.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Wed Sep 13, 2017 6:29 pm

Shana wrote:

Great news! That's an amazing jump isn't it? It's nice to have an "end date" to look forward to. Now go and get yourself some Häagen-Daz!

Hugs,

Shana


Yes. Looking forward to OCT 24th when I can ring that bell off the wall:)

Ice-cream - may be a little too cold for me still. Still have some mild cold sensitivity - mostly on the feet when they get AC blown on them direct.

Lee wrote:When you think about it, we might be a bit crazy around here (warped). Happy to get chemo


Yeah, I'm not really happy to get the chemo - I hope it's done what it needs to do. I'm more happy that I'm getting down to closing time with the chemo. Hopefully for good.
Some mild CEA level increases are giving me some anxiety up to 3.9, but supposedly CEA increases are quite common while on chemo so hope its something other than recurrence.
Looking forward to being done with Chemo - healing and getting scans. I haven't had one since pre surgery in early April. Which showed no signs of growths from pelvis to neck other than the primary tumor and some swollen lymphs near the primary.

Thanks for your responses :)
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

User avatar
Shana
Posts: 146
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Wed Sep 20, 2017 2:19 pm

benben wrote:
Shana wrote:

Great news! That's an amazing jump isn't it? It's nice to have an "end date" to look forward to. Now go and get yourself some Häagen-Daz!

Hugs,

Shana


Yes. Looking forward to OCT 24th when I can ring that bell off the wall:)

Ice-cream - may be a little too cold for me still. Still have some mild cold sensitivity - mostly on the feet when they get AC blown on them direct.

Lee wrote:When you think about it, we might be a bit crazy around here (warped). Happy to get chemo


Yeah, I'm not really happy to get the chemo - I hope it's done what it needs to do. I'm more happy that I'm getting down to closing time with the chemo. Hopefully for good.
Some mild CEA level increases are giving me some anxiety up to 3.9, but supposedly CEA increases are quite common while on chemo so hope its something other than recurrence.
Looking forward to being done with Chemo - healing and getting scans. I haven't had one since pre surgery in early April. Which showed no signs of growths from pelvis to neck other than the primary tumor and some swollen lymphs near the primary.

Thanks for your responses :)



Hi Ben,

Hope all is good for you this week. I do wish that I had an end date for chemo on my calendar but no such luck at this time. My oncologist is happy with the progress that I've made on my new cocktail. It's hard to believe that I started chemo in January 2017 and I've had such few sessions due to all my medical setbacks so I have a lot of catch up to do!

Chemo this Monday, so far so good. I expect Zarxio after next week chemo but perhaps I can get by with fewer than three shots. Hoping for stable WBC.

Sending you some virtual carrot cake since you can't eat ice cream yet :D

Stay well, hugs!

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
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Thu Sep 21, 2017 12:02 am

Shana wrote:

Hi Ben,

Hope all is good for you this week. I do wish that I had an end date for chemo on my calendar but no such luck at this time. My oncologist is happy with the progress that I've made on my new cocktail. It's hard to believe that I started chemo in January 2017 and I've had such few sessions due to all my medical setbacks so I have a lot of catch up to do!

Chemo this Monday, so far so good. I expect Zarxio after next week chemo but perhaps I can get by with fewer than three shots. Hoping for stable WBC.

Sending you some virtual carrot cake since you can't eat ice cream yet :D

Stay well, hugs!

Shana


Thank you Shana.
Its my off week, and while i''m smack dab in the middle of nadir - feeling pretty good.
I did get mild thrush again after last treatment. I thought the oxaliplatin was the culprit, but seems to be about the same.
It did go away by around day 6/7 with the magic mouthwash. I filled another prescription of it today in preparations for next treatment #10 on Tuesday - yaye.
Little concerned about flu/cold season as my son said today he had a class with people sneezing and coughing a lot. I hope he doesn't come down with anything.
He's also good about stripping down and showering directly after school to wash away any germs he may have carried home. I'm hopeful WBC are up by Monday.
If not it's another zarxio shot. Looking forward to OCT 24th which is treatment #12.. Then I can take some time to heal and get CT scans/scoped etc.. Hoping this
will be the end of chemo for me - With NED for life.

The cold sensitivity has almost gone completely for me. I'm still experiencing some numbness and tingling in the feet and hands. That could be hand/foot syndrome from the 5FU. About the same as before. Onc said could be a year before the neuropathy is completely gone. I've had some cold drinks, but mostly stick to room temp bottled water. The cold didn't seem to effect me much when I did do it. It's good the cold is not too bothersome. The temps here went from upper 90's to upper 60's for highs. Lows are getting down to low 40's. Probably will start snowing here right around my last treatment.

Glad to hear things are still looking positive for you. I hope you continue to have good progress and bone pain free WBC boosts.
May Monday go well. Many Hugs and well wishes.

thank you :)
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

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Robino1
Posts: 216
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: granix extreme bone pain

Postby Robino1 » Thu Sep 21, 2017 8:01 am

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
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
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
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

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Shana
Posts: 146
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Thu Sep 21, 2017 4:24 pm

benben wrote:
Thank you Shana.
Its my off week, and while i''m smack dab in the middle of nadir - feeling pretty good.
I did get mild thrush again after last treatment. I thought the oxaliplatin was the culprit, but seems to be about the same.
It did go away by around day 6/7 with the magic mouthwash. I filled another prescription of it today in preparations for next treatment #10 on Tuesday - yaye.
Little concerned about flu/cold season as my son said today he had a class with people sneezing and coughing a lot. I hope he doesn't come down with anything.
He's also good about stripping down and showering directly after school to wash away any germs he may have carried home. I'm hopeful WBC are up by Monday.
If not it's another zarxio shot. Looking forward to OCT 24th which is treatment #12.. Then I can take some time to heal and get CT scans/scoped etc.. Hoping this
will be the end of chemo for me - With NED for life.

The cold sensitivity has almost gone completely for me. I'm still experiencing some numbness and tingling in the feet and hands. That could be hand/foot syndrome from the 5FU. About the same as before. Onc said could be a year before the neuropathy is completely gone. I've had some cold drinks, but mostly stick to room temp bottled water. The cold didn't seem to effect me much when I did do it. It's good the cold is not too bothersome. The temps here went from upper 90's to upper 60's for highs. Lows are getting down to low 40's. Probably will start snowing here right around my last treatment.

Glad to hear things are still looking positive for you. I hope you continue to have good progress and bone pain free WBC boosts.
May Monday go well. Many Hugs and well wishes.

thank you :)


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!

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
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress


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