granix extreme bone pain

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User avatar
Shana
Posts: 114
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Wed Aug 16, 2017 11:58 pm

Hi Ben,

Shot 3 today and knocking on wood so far so good. The tincture is helping the D a lot now that I am taking the correct dosage. It doesn't affect any pain that I might have, way too weak and very small dose. I can easily drive and carry on as normal unlike pill form pain killers. I may just buy a bottle of it tomorrow out of pocket if the insurance issue persists. What the heck, it's only money ... and comfort is worth a lot to me these days!

My potassium plummeted from 4.3 to 2.8 so they are making me take 40mgs a day for the next 7 days. Those pills were made for horses not humans. I get them down by slipping them into applesauce like they taught me in the hospital. I will get blood drawn on Saturday to help determine if I start round 4 of Irinotecan + cetuximab on Monday. I will push for at least the Cetuximab if they want to hold off another week for the Irinotecan. I find that my willingness to be more agressive when I feel stronger physically reassures them. I'm not a complacent patient, my survival depends on staying engaged and informed. Along with finding mutual support from each other, I think gaining knowledge from others is one of the critical reasons we're all part of this club.

My 93 year old dad fell and broke his wrist today, I wasn't able to take him to the ER since I was hooked up to saline but my daughter managed to leave work and take him. Just another slice of life that we all experience. He looks good and sounded great, still waiting to hear if he will need surgery which is worrisome at his age but just taking all of this one day at a time. He lives in San Francisco and the hospital is very good.

Loved the link to the tough baby pic!

Hope that your numbers improve until you're in the GREEN as in go for it zone.

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: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Sat Aug 19, 2017 4:23 pm

Shana wrote:Hi Ben,

Shot 3 today and knocking on wood so far so good. The tincture is helping the D a lot now that I am taking the correct dosage. It doesn't affect any pain that I might have, way too weak and very small dose. I can easily drive and carry on as normal unlike pill form pain killers. I may just buy a bottle of it tomorrow out of pocket if the insurance issue persists. What the heck, it's only money ... and comfort is worth a lot to me these days!

My potassium plummeted from 4.3 to 2.8 so they are making me take 40mgs a day for the next 7 days. Those pills were made for horses not humans. I get them down by slipping them into applesauce like they taught me in the hospital. I will get blood drawn on Saturday to help determine if I start round 4 of Irinotecan + cetuximab on Monday. I will push for at least the Cetuximab if they want to hold off another week for the Irinotecan. I find that my willingness to be more agressive when I feel stronger physically reassures them. I'm not a complacent patient, my survival depends on staying engaged and informed. Along with finding mutual support from each other, I think gaining knowledge from others is one of the critical reasons we're all part of this club.

My 93 year old dad fell and broke his wrist today, I wasn't able to take him to the ER since I was hooked up to saline but my daughter managed to leave work and take him. Just another slice of life that we all experience. He looks good and sounded great, still waiting to hear if he will need surgery which is worrisome at his age but just taking all of this one day at a time. He lives in San Francisco and the hospital is very good.

Loved the link to the tough baby pic!

Hope that your numbers improve until you're in the GREEN as in go for it zone.

Shana


Shana,
Glad to hear you had no bone pain - hopefully its all working and your counts will be up.
Sorry to hear about your dad. 93 - that's an accomplishment hopefully he heals well from his fall.

best 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

benben
Posts: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Mon Aug 28, 2017 11:06 pm

Hello Bone pain my old friend.

Yep I had zarxio shots Thurs and Friday.
I had CBC done today.

Unfortunately my ANC are 760 so I got the third shot today.
Took 25 mg of CBD at the cancer center once I knew I was getting the shot.
Got the shot around 9 am and some mild bone pain set in around 3pm.
Gradually increasing, took some more THC/CBD chocolate about an hour ago.
Pain level around a 3-4 on the scale.

Hopefully that means I can get treatment tomorrow and ANC will be up there.
Platelets still low but going slowly up - up to 119. Guess pumpkin and kale are working.

My nurse kinda threw me off today saying "We might have to change your meds".
Unfortunately I guess I wasn't thinking and didn't ask her to elaborate. I was assuming she meant the zarxio to something else since my neutrophil counts were still low.
but she might have meant folfox. I'm pretty sure I will be done with oxi after round 8. They took an LGH scan today. First time they took it and my counts were 257.
Normal is 225 on high side. So there is some elevation there. HGB still slightly low too.
----------------------
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: 114
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Mon Aug 28, 2017 11:37 pm

benben wrote:Hello Bone pain my old friend.

Yep I had zarxio shots Thurs and Friday.
I had CBC done today.

Unfortunately my ANC are 760 so I got the third shot today.
Took 25 mg of CBD at the cancer center once I knew I was getting the shot.
Got the shot around 9 am and some mild bone pain set in around 3pm.
Gradually increasing, took some more THC/CBD chocolate about an hour ago.
Pain level around a 3-4 on the scale.

Hopefully that means I can get treatment tomorrow and ANC will be up there.
Platelets still low but going slowly up - up to 119. Guess pumpkin and kale are working.

My nurse kinda threw me off today saying "We might have to change your meds".
Unfortunately I guess I wasn't thinking and didn't ask her to elaborate. I was assuming she meant the zarxio to something else since my neutrophil counts were still low.
but she might have meant folfox. I'm pretty sure I will be done with oxi after round 8. They took an LGH scan today. First time they took it and my counts were 257.
Normal is 225 on high side. So there is some elevation there. HGB still slightly low too.


Simon and Garfunkel... good choice considering the circumstances!
Sorry that the Zarxio is rough for you, good that you have the CBD on hand to help with the bone pain. Keep up the pumpkin and kale, sounds like a great natural boost and healthy too. I've never heard of LGH scan, is that a blood test too? So many tests and numbers to keep up with, the human body is so complex and we take it for granted until the clockwork goes haywire!

I had chemo today, Irinotecan + Erbitux, my oncologist adjusted the Irinotecan dose down a bit and ordered a CT scan to see how things are looking. I want to know and hope there's been improvement to indicate that we're on the right track. I don't have a set number of rounds, we're just going with 2 weeks on and 1 week off for the near term and quite possibly for the long term. She said my CEA is just too high to use. My platelets are within normal range, postassium is low side of normal now but magnesium is low which has caused some minor cramping which I shake off once I get moving. I'll be taking both Potassium and Magnesium pills to get me back to normal.

Zarxio shots scheduled for next week based on WBC results from this Saturday's bloodwork. It's a drag to go in for the shots but that's my job now so I'm just doing what I need to do, nothing is too much work when it's about maintaining and improving my condition. I feel lucky to have been spared the bone pain (so far) so no complaints from me.

Hope your evening goes well and your pain mellows to none :)

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: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Tue Aug 29, 2017 6:40 pm

Shana wrote:Simon and Garfunkel... good choice considering the circumstances!
Sorry that the Zarxio is rough for you, good that you have the CBD on hand to help with the bone pain. Keep up the pumpkin and kale, sounds like a great natural boost and healthy too. I've never heard of LGH scan, is that a blood test too? So many tests and numbers to keep up with, the human body is so complex and we take it for granted until the clockwork goes haywire!

I had chemo today, Irinotecan + Erbitux, my oncologist adjusted the Irinotecan dose down a bit and ordered a CT scan to see how things are looking. I want to know and hope there's been improvement to indicate that we're on the right track. I don't have a set number of rounds, we're just going with 2 weeks on and 1 week off for the near term and quite possibly for the long term. She said my CEA is just too high to use. My platelets are within normal range, postassium is low side of normal now but magnesium is low which has caused some minor cramping which I shake off once I get moving. I'll be taking both Potassium and Magnesium pills to get me back to normal.

Zarxio shots scheduled for next week based on WBC results from this Saturday's bloodwork. It's a drag to go in for the shots but that's my job now so I'm just doing what I need to do, nothing is too much work when it's about maintaining and improving my condition. I feel lucky to have been spared the bone pain (so far) so no complaints from me.

Hope your evening goes well and your pain mellows to none :)

Shana


Yes the Zarxio was really rough last night. Woke up on and off from the pain.
Pain went up to about 7 level and I dosed another 25mg of CBD. This did decrease pain levels to about 4-5 and was able to fall asleep for few hours before waking and pain had mostly subsided. Just some mild residuals 1-2 pain level this morning.

I went in for complete blood work, and yes for me its no pain no gain - cause my WBC shot up to 15k and neutrophils to 7600 (highest its been all treatment long).
My Onc decided I've had enough oxaliplatin. He said based on ASCO report and my tumor pathology putting recurrence at low risk, he thinks I've had enough.
Neuropathy still increasing in hands and feet as well as low platelets. He said we'd do Luke with 5-FU for remaining sessions. I can tell you right now without the OXI the chemo is much easier as I did receive treatment 8 today with the WBC being rocketed in just one day and the platelets being above 100.

I am looking forward to healing my body from the chemo, not having neutropenia, and yes - not having to take more bone crushing. I'll be going in 13 days for blood work (day before next infusion) and if the neutrophils are low will be getting one zarxio shot. Onc and Nurse both think I won't need it by next treatment. We shall see. My platelets went up another 3 points to 122, which is still low but not overly risky.

I hope your CT Scan shows great reduction in the tumors and can pave a way for resection/curative measures.

best 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: 114
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Wed Aug 30, 2017 10:44 am

Good news for you, Ben!

You've struggled with neutropenia for so long and have been so vigilant. I hope your WBC stays stable and you can feel better about being around people while still avoiding germs.

I'm hoping for some good results from upcoming CT but I'm also aware that I will only have had 4 Irinotecan infusions prior to the scan. My oncologist is particularly interested in seeing liver met shrinkage which was noted back in June but I was off all chemo including Erbitux after my surgery for about 5 weeks. Hoping for the best and keeping track of my labs. My WBC dropped from 7.6 to 4.9 without chemo last week so I expect to see it drop again after Monday infusion and will probably need Zarxio next week. ANC is 3.8 so that's still okay.

Hope your week goes well, I'll update CT results next week after I see my oncologist.

Best to you!
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: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Wed Aug 30, 2017 5:15 pm

Shana wrote:Good news for you, Ben!

You've struggled with neutropenia for so long and have been so vigilant. I hope your WBC stays stable and you can feel better about being around people while still avoiding germs.

I'm hoping for some good results from upcoming CT but I'm also aware that I will only have had 4 Irinotecan infusions prior to the scan. My oncologist is particularly interested in seeing liver met shrinkage which was noted back in June but I was off all chemo including Erbitux after my surgery for about 5 weeks. Hoping for the best and keeping track of my labs. My WBC dropped from 7.6 to 4.9 without chemo last week so I expect to see it drop again after Monday infusion and will probably need Zarxio next week. ANC is 3.8 so that's still okay.

Hope your week goes well, I'll update CT results next week after I see my oncologist.

Best to you!


Thanks Shana,

Wishing you good shrinkage so that you might be able to have the mets surgically removed if possible and be one of the NED!
Or at least have the cancer stabilized! Thoughts are with you :)

I woke up feeling like my body was already adjusting back to feeling good as opposed to slammed to the floor.
OXI really smacked me around.
----------------------
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: 114
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Sat Sep 02, 2017 8:59 am

Good news! Dr called me yesterday afternoon to tell me that the CT showed liver mets shrinkage of about 1cm and incredibly no more blockage! Of course I still have the colostomy but more shrinkage means possible resection and connection down the road... the long road. She was very pleased and didn't want me to have to wait until Tuesday to share the positive news.

Just keeping hydrated and started taking my tincture but just knowing that it's working makes the side effects easier to deal with!

It's going to be 109 today, incredible for Northern Cali, they're harvesting grapes at 4am to dodge the heat of the day. I'd love some fog but even San Francisco is sizzling hot!
Hope you're doing well and so happy to hear that you're done with the oxi!

Wishing you the very best,

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: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Sat Sep 02, 2017 1:45 pm

Shana wrote:Good news! Dr called me yesterday afternoon to tell me that the CT showed liver mets shrinkage of about 1cm and incredibly no more blockage! Of course I still have the colostomy but more shrinkage means possible resection and connection down the road... the long road. She was very pleased and didn't want me to have to wait until Tuesday to share the positive news.

Just keeping hydrated and started taking my tincture but just knowing that it's working makes the side effects easier to deal with!

It's going to be 109 today, incredible for Northern Cali, they're harvesting grapes at 4am to dodge the heat of the day. I'd love some fog but even San Francisco is sizzling hot!
Hope you're doing well and so happy to hear that you're done with the oxi!

Wishing you the very best,

Shana


That's GREAT NEWS Shana! I'm happy for you. I hope the mets shrink even more for you.
109 is hot! Slated for 100 degrees here and I'm substantially more north. I know winter is coming:) Soon.
Last winter we had record snows and cold.

I hope I received enough OXI to make sure no recurrence. I was ready to go one more round with OXI, but also happy to be done with it.
I'm getting a little more neuropathy now. My onc suggested I would for about 2-3 months and then it would start to subside. I can still do my work and walk.
So I'm ok with some numbness in my hands and feet. The worst neuropathy effect to me is the inability to swallow every once in a while. I hope that one goes
away cause its quite annoying.

Stay cool and Hydrated Shana. Keep up the good work.
----------------------
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: 114
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Tue Sep 05, 2017 9:37 pm

Hey Ben,

Just checking in on you. Glad to hear that you're done with the Oxi. I only had Folfox for two sessions and remember that weird cold sensitivity which was quite bizarre.

Chemo today and then Zarxio on Wed, Thurs and Friday. My WBC is about 4.5 but she wants to keep it from falling after todays chemo. We discussed Neulasta as an option but since my next chemo treatment is 12 days from now I fall short of the 14 days without chemo required for Neulasta. It's about 60 miles round trip to cancer center but well worth the trip x 3 to keep WBC in normal range. Hoping that my no bone pain luck continues, but if not then I'll try your CBD regimen and see if it works for me.

Stay cool, stay strong and hoping for your continued good results!

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
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: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Wed Sep 06, 2017 3:38 pm

Shana wrote:Hey Ben,

Just checking in on you. Glad to hear that you're done with the Oxi. I only had Folfox for two sessions and remember that weird cold sensitivity which was quite bizarre.

Chemo today and then Zarxio on Wed, Thurs and Friday. My WBC is about 4.5 but she wants to keep it from falling after todays chemo. We discussed Neulasta as an option but since my next chemo treatment is 12 days from now I fall short of the 14 days without chemo required for Neulasta. It's about 60 miles round trip to cancer center but well worth the trip x 3 to keep WBC in normal range. Hoping that my no bone pain luck continues, but if not then I'll try your CBD regimen and see if it works for me.

Stay cool, stay strong and hoping for your continued good results!

Hugs,
Shana



Hi Shana.
I'm doing good. Been extremely busy with work. I worked entire labor day weekend like 6-8 hours a day. Yesterday was a 10 hour day of work.
Today is much the same, but taking lil break. Temps have been cooler since the entire NW seems to be on fire. Some teenagers set the entire gorge ablaze by dropping firecrackers into a canyon.
It's quite sad as that area is a historical area with some of the most beautiful forests and hiking trails in the world along with waterfalls, rivers and streams. Pretty much all of Oregon and Washington are in a haze of smoke - once again (right after we got some clear up from all the Canadian smoke). It's a bummer in that it keeps me from doing my 2 mile daily walk.

Hopefully you continue to have no bone pain. It can really be painful. Since my ONC dropped me off OXI he seemed to think my WBC would bounce back. I am thinking it has, as well as platelet count as my energy level is almost back to normal, my hair is starting to grow back (had shaved it since I was tired of clumps of hair falling out in the shower and on my pillows), and just feel better overall. I still have a little numbness in the fingers and feet, but that's getting less as well as the not being able to swallow. As for the cold sensitivity it was one of the side effects that I experienced the least. With it only effecting me on days 1-3/4 and then going away rest of cycle. That one is completely gone, but still keeping the cold to minimum on drinks as one of my sweet nurses said it would increase other neuropathy effects so to refrain for a couple months. I've had really loose stools since day 6. Days 1-5 bowel movements were more on the constipated side. Pretty much par for the course, obviously was the 5fu causing the loose stool unless something else is going on. Unfortunately its hard to gain weight when it happens. My weight continues to slide a bit. Down to 155 lbs from 183 pre diagnosis.

I'll be getting CBC and all the other standard blood tests on the 11th, day before my next infusion. If WBC are up I won't be getting another zarxio.
If they are still under, They will shoot me up with Zarxio that day.

Hope you are experiencing more standard BAY area temps.
May you continue having good progress!

Hugs back at 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 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

Lee
Posts: 5161
Joined: Sun Apr 16, 2006 4:09 pm

Re: granix extreme bone pain

Postby Lee » Wed Sep 06, 2017 3:55 pm

If you got 6 rounds with OXI, I believe you are okay. That is the newest trend. I had 12 cycles when it was still experimental, soon after it was approved, they dropped the number to 8. And some time with in the past years down to 6.

Good luck, That bone pain sounds like no fun.

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!

User avatar
Shana
Posts: 114
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Thu Sep 07, 2017 8:35 am

Hi Shana.
I'm doing good. Been extremely busy with work. I worked entire labor day weekend like 6-8 hours a day. Yesterday was a 10 hour day of work.
Today is much the same, but taking lil break. Temps have been cooler since the entire NW seems to be on fire. Some teenagers set the entire gorge ablaze by dropping firecrackers into a canyon.
It's quite sad as that area is a historical area with some of the most beautiful forests and hiking trails in the world along with waterfalls, rivers and streams. Pretty much all of Oregon and Washington are in a haze of smoke - once again (right after we got some clear up from all the Canadian smoke). It's a bummer in that it keeps me from doing my 2 mile daily walk.

Hopefully you continue to have no bone pain. It can really be painful. Since my ONC dropped me off OXI he seemed to think my WBC would bounce back. I am thinking it has, as well as platelet count as my energy level is almost back to normal, my hair is starting to grow back (had shaved it since I was tired of clumps of hair falling out in the shower and on my pillows), and just feel better overall. I still have a little numbness in the fingers and feet, but that's getting less as well as the not being able to swallow. As for the cold sensitivity it was one of the side effects that I experienced the least. With it only effecting me on days 1-3/4 and then going away rest of cycle. That one is completely gone, but still keeping the cold to minimum on drinks as one of my sweet nurses said it would increase other neuropathy effects so to refrain for a couple months. I've had really loose stools since day 6. Days 1-5 bowel movements were more on the constipated side. Pretty much par for the course, obviously was the 5fu causing the loose stool unless something else is going on. Unfortunately its hard to gain weight when it happens. My weight continues to slide a bit. Down to 155 lbs from 183 pre diagnosis.

I'll be getting CBC and all the other standard blood tests on the 11th, day before my next infusion. If WBC are up I won't be getting another zarxio.
If they are still under, They will shoot me up with Zarxio that day.

Hope you are experiencing more standard BAY area temps.
May you continue having good progress!

Hugs back at you :)[/quote]


Glad all is well with you Ben,

You need to eat more but I know it's hard to do when your stomach is going in all directions. I lost quite a bit of weight too and only recently have been able to gain some back. I was down to 126 lbs which was way too skinny for me especially without my former muscle tone. I am up to 138-140 now and have notice increase in calf muscle from walking. I've managed to get 2-3 miles in on non chemo days. I went to Costco one day when it was too hot outside and Nordstrom as well. I had to replace most of my clothes due to the weight loss, which I quite enjoy, been a long time since I was a size 6! (only upshot in this ordeal) II never thought it would be so hard to actually gain weight since it's been a battle to lose in the past.

I had first Zarxio shot yesterday, no bone pain (knock on wood) and scheduled for two more. Then I am off treatment next week and resume chemo on 9/18 if bloodwork all checks out. My tincture of opium is keeping diarrhea in check. Happily my family doesn't have to hear about my bowel life all the time. This forum is the one place where we can be as graphic as necessary :D

Steroids were reduced in half, I am hoping for more reduction since I'm not experiencing any nausea with the new chemo cocktail like I did with 5FU. I was getting a whopping 20mg and got 10 mg on Monday. I was able to sleep some but no more than 5 hours with waking up here and there. I've been up since 5am, breakfast is warming on the stove, waiting for my daughter to get up and eat before she goes to work. The steroids do help with appetite, do you get any as pre-med prior to infusion? If so, how does it affect you? I just get such a surge of energy that lasts for 2-3 days then I pretty much crash for the next day to catch up on sleep. It's no wonder that some athletes crave the stuff!

It's cooled down here finally and we're supposed to get some sprinkles today but it's just passing through and then more summer temps in 80's and perhaps low 90's. Hope it cools down for you too and it's just awful that kids set fires and destroyed all that land. There's just no reason for that, I hope they catch them if they haven't as yet.

Have a great day, 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
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: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Thu Sep 07, 2017 4:24 pm

Lee wrote:If you got 6 rounds with OXI, I believe you are okay. That is the newest trend. I had 12 cycles when it was still experimental, soon after it was approved, they dropped the number to 8. And some time with in the past years down to 6.

Good luck, That bone pain sounds like no fun.

Lee


I received 7 rounds of folfox.
1-2 full dose
3-6 90% oxi - full 5FU and Leucovorin
7 - 75% oxi - full 5FU and Leucovorin
8 - no oxi - full 5FU and Leucovorin

treatments 9-12 will be full 5fu and Luke - no OXI.

So hopefully it will be effective on any spread. My tumor path was low grade - well/moderate defined.
one lymphnode infected out of 28 removed.



Shana wrote:Glad all is well with you Ben,

You need to eat more but I know it's hard to do when your stomach is going in all directions. I lost quite a bit of weight too and only recently have been able to gain some back. I was down to 126 lbs which was way too skinny for me especially without my former muscle tone. I am up to 138-140 now and have notice increase in calf muscle from walking. I've managed to get 2-3 miles in on non chemo days. I went to Costco one day when it was too hot outside and Nordstrom as well. I had to replace most of my clothes due to the weight loss, which I quite enjoy, been a long time since I was a size 6! (only upshot in this ordeal) II never thought it would be so hard to actually gain weight since it's been a battle to lose in the past.

I had first Zarxio shot yesterday, no bone pain (knock on wood) and scheduled for two more. Then I am off treatment next week and resume chemo on 9/18 if bloodwork all checks out. My tincture of opium is keeping diarrhea in check. Happily my family doesn't have to hear about my bowel life all the time. This forum is the one place where we can be as graphic as necessary :D

Steroids were reduced in half, I am hoping for more reduction since I'm not experiencing any nausea with the new chemo cocktail like I did with 5FU. I was getting a whopping 20mg and got 10 mg on Monday. I was able to sleep some but no more than 5 hours with waking up here and there. I've been up since 5am, breakfast is warming on the stove, waiting for my daughter to get up and eat before she goes to work. The steroids do help with appetite, do you get any as pre-med prior to infusion? If so, how does it affect you? I just get such a surge of energy that lasts for 2-3 days then I pretty much crash for the next day to catch up on sleep. It's no wonder that some athletes crave the stuff!

It's cooled down here finally and we're supposed to get some sprinkles today but it's just passing through and then more summer temps in 80's and perhaps low 90's. Hope it cools down for you too and it's just awful that kids set fires and destroyed all that land. There's just no reason for that, I hope they catch them if they haven't as yet.

Have a great day, hugs!


Lol. Eating more, I actually am eating more than pre-diagnosis. I think there is some Malabsorption ongoing after the surgery.
There are days I eat less - obviously. Disconnect day 3-5 I eat less than normal, due to fatigue and nausea. I only took CBD for days 3/4 this time.
Haven't used any more CBD or THC - I do notice I eat even more when consuming THC at night. Also get better sleep. So perhaps I should start taking low dose at bedtime again.

Yes I get steroids each session. They don't really do much for me energy wise. I mean they don't keep me awake for sure.

Glad your getting some cooldown. Hoping for some clear out of smoke these next few days. Forecast says more smoke will probably arrive on Sunday - uggh.
Still very smoky here.

Keep up the good work 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 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

Lee
Posts: 5161
Joined: Sun Apr 16, 2006 4:09 pm

Re: granix extreme bone pain

Postby Lee » Fri Sep 08, 2017 8:54 pm

benben wrote:
I received 7 rounds of folfox.
1-2 full dose
3-6 90% oxi - full 5FU and Leucovorin
7 - 75% oxi - full 5FU and Leucovorin
8 - no oxi - full 5FU and Leucovorin


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
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!


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