Deciding to stop the Avastin

Susanbm
Susanbm Member Posts: 61
edited March 2014 in Colorectal Cancer #1
I have been on a one year clinical trial of Avastin for my State IIIcc. During the 6 months of chemo, I had no side effects that they could specifically point to the Avastin BUT, since I have finished the chemo and been on the Avastin only, I have experienced a great amount of pain in my joints/bones. My wrists, arms, ankles and shoulders have given me the most pain. My dr. was very puzzled as Avastin for his Stage IV patients is a routine matter and he has not had any complaints from them regarding pain--maybe it is the amount given? The pain didn't begin immediately, it built up over a few months. I noticed a slight twinge of pain every so often but nothing that lingered. In the middle of Feb. it became so persistent that I had to get some relief. I was taking all sorts of pain meds but it did not help. The dr. decided to put me on high dose steroid pack and after a few days the pain was gone!! I asked if he would continue givinig them to me for the remainder of my treatments but he said that he did not want to do that. Well, it's been creeping up again and on Friday I ended up going to the emergency room for my pain. No only my wrists, arms and shoulders but my chest was hurting as well. I was pretty sure I wasn't having a heart attack but my pain was so intense that the dr. wanted me to have all the tests. So, they did heart ekg and chest x-rays and everything was normal. So, I'm back on the steroid pack and hopefully will be back to normal --well, as "normal" I ever was :). Anyway, I've only got 3 rounds of the Avastin left and I beleive I am going to stop. I know that the purpose of a clinical trial is to evaluate the efectivness of a drug regimen-good or bad-so I'm hesitant to give up when I'm so close to being finished. Has anyone else experienced this kind of pain from Avastin?

Comments

  • jerseysue
    jerseysue Member Posts: 624 Member
    #2
    Well I can't believe it finally someone talking about pain. I am stage 4 and I've had Avastin and yes I had pain. It first started in my shoulders and I told my onc about it and he kind of brushed it off. I thought it was from my nupergen shots (for low white count). I had 12 treatments of the avastin and when I was done late November is when it really got bad. So my onc took some blood work for arthritis it came back border line. One week it got so bad I couldn't life my arms, put on a shirt etc. It lasted for a few weeks and I took pain meds as well. I do want to let you know that I still have pain BUT it is nothing at all like I was experiencing a few weeks after chemo. But that is very interesting that it could be the Avastin I never would have thought of that.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #3
    jerseysue said:

    Well I can't believe it finally someone talking about pain. I am stage 4 and I've had Avastin and yes I had pain. It first started in my shoulders and I told my onc about it and he kind of brushed it off. I thought it was from my nupergen shots (for low white count). I had 12 treatments of the avastin and when I was done late November is when it really got bad. So my onc took some blood work for arthritis it came back border line. One week it got so bad I couldn't life my arms, put on a shirt etc. It lasted for a few weeks and I took pain meds as well. I do want to let you know that I still have pain BUT it is nothing at all like I was experiencing a few weeks after chemo. But that is very interesting that it could be the Avastin I never would have thought of that.

    Hi Susan. I did 5fu/Leucovorin so I don't know the effects of Avastin. However, I have a feeling that as far as any chemo (poison) is concerned I would not be surprised if others had similar pain effects on the stuff I had. We all know that each chemo regimen has different and sometimes long term effects. Not long after my chemo was completed I had so much pain in joints and major chest pain that I had to do extensive testing...a lot of it for possible heart complications. It turned out that they were convinced that I had "unusual" side effects to the chemo. My heart was fine albiet blood pressure and cholesterol was raised. The joint pain was put down to the onset of arthritis. Prior to my dx I was VERY pysically active with no sign whatsoever of arthritis or heart problems. So it is curious to note that within a couple of months of chemo I suddenly had joints that were very painfull. I was not able to continue steroid treatment as that had its own effects. OK...this does not relate to Avastin but personally I have a feeling that the chemo "stuffed up" my previously energetic body. I have never felt the same...even now...so long after chemo nothing is back to the way it was. Mornings are the worst...it takes a while to get moving.
    So I guess it would be interesting to know how many also have had radical changes to the way their body feels compared to pre-chemo.
    cheers, Ross and Jen
  • tkd3g
    tkd3g Member Posts: 767
    #4
    kangatoo said:

    Hi Susan. I did 5fu/Leucovorin so I don't know the effects of Avastin. However, I have a feeling that as far as any chemo (poison) is concerned I would not be surprised if others had similar pain effects on the stuff I had. We all know that each chemo regimen has different and sometimes long term effects. Not long after my chemo was completed I had so much pain in joints and major chest pain that I had to do extensive testing...a lot of it for possible heart complications. It turned out that they were convinced that I had "unusual" side effects to the chemo. My heart was fine albiet blood pressure and cholesterol was raised. The joint pain was put down to the onset of arthritis. Prior to my dx I was VERY pysically active with no sign whatsoever of arthritis or heart problems. So it is curious to note that within a couple of months of chemo I suddenly had joints that were very painfull. I was not able to continue steroid treatment as that had its own effects. OK...this does not relate to Avastin but personally I have a feeling that the chemo "stuffed up" my previously energetic body. I have never felt the same...even now...so long after chemo nothing is back to the way it was. Mornings are the worst...it takes a while to get moving.
    So I guess it would be interesting to know how many also have had radical changes to the way their body feels compared to pre-chemo.
    cheers, Ross and Jen

    Ditto here on the pain.

    I did 5FU Luek with the radiation,then did 3 or 4 treatments with the Oxaliplatin. Had to stop that because side effects were too severe. Went back to just 5FU and Luek to finish up.

    Pain:yes.
    Healthy, active never sick before 43 year old: used to be.
    Fat, achey, joint hurting soon to be 45 yr. old: got that straight.

    I have the weirdest things. My thumbs, on both hands, are almost crippled with muscle pain. My legs and back and almostevery other joint hurt on rotating schedules????

    Arthritis my ****. Maybe it is, but it is totally chemo or radiation induced.I have NO doubt in my mind.

    PLUS: I have become incredibly stupid.:( I can't remember anything. I have lists all over my house and still forget stuff.

    But, I'm doing ok. I am hoping my organic eating and juicing will help restore my health.

    Sorry, to ramble.

    Barb
  • nanuk
    nanuk Member Posts: 1,358 Member
    #5
    This is interesting: I have been on Avastin/Erbitux, bi-weekly, 450mg IV/840mg IV respectively, for about 6 weeks.(stage IV,mets to Lungs) The past week I've experienced extreme joint/muscle pain in legs, knees & back. Labs are near normal,except for "moderate macrocytosis", which means abnormal large red blood cells usually assiciated with anemia, caused by a failure of the the stomach to absorb vitamin b-12, which can lead to gastro disturbances and spinal cord lesions.
    Although I can't rule out complications from my degenerative back, I've decided to discontinue treatment for the next 5 weeks or more, and then re-assess my side effects or lack of them and decide whether or not to continue the monotherapy.
    There has been a response in the form of a reduction in CEA level-(from 21 to 6) and I want to have scans to confirm that the tumors are also affected, and hopefully continue treatment if there is a reduction, and side effects dissappear.

    What I would like to see is a group response and comparison of side effects/responses to these drugs..kinda our own little study. It might even help our docs make treatment/doseage decisions.
    whaddayathink? Bud
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    nanuk said:

    This is interesting: I have been on Avastin/Erbitux, bi-weekly, 450mg IV/840mg IV respectively, for about 6 weeks.(stage IV,mets to Lungs) The past week I've experienced extreme joint/muscle pain in legs, knees & back. Labs are near normal,except for "moderate macrocytosis", which means abnormal large red blood cells usually assiciated with anemia, caused by a failure of the the stomach to absorb vitamin b-12, which can lead to gastro disturbances and spinal cord lesions.
    Although I can't rule out complications from my degenerative back, I've decided to discontinue treatment for the next 5 weeks or more, and then re-assess my side effects or lack of them and decide whether or not to continue the monotherapy.
    There has been a response in the form of a reduction in CEA level-(from 21 to 6) and I want to have scans to confirm that the tumors are also affected, and hopefully continue treatment if there is a reduction, and side effects dissappear.

    What I would like to see is a group response and comparison of side effects/responses to these drugs..kinda our own little study. It might even help our docs make treatment/doseage decisions.
    whaddayathink? Bud

    Bud, I hope you DO talk to onc or someone about this. I find it VERY SIGNIFICANT that so many are having this side effect. Not during my colon ca, but during breast chemo, questions being raised about ACT causing arthritis. Same pain as you all described. If we don't tell DRs, how will they know?????
    Kathi
  • spongebob
    spongebob Member Posts: 2,565 Member
    #7
    KathiM said:

    Bud, I hope you DO talk to onc or someone about this. I find it VERY SIGNIFICANT that so many are having this side effect. Not during my colon ca, but during breast chemo, questions being raised about ACT causing arthritis. Same pain as you all described. If we don't tell DRs, how will they know?????
    Kathi

    For what it's worth, I have residual arthritis in my hands which was caused by my chemo according to my onc.

    Nothing debilitating, just a good reason to get stationed where it stays warm year round! (so what the #$%^ am I doing in Washington, DC???)
  • terril
    terril Member Posts: 296
    #8
    I am on CPT-11, 5FU, leuk, and Avastin. No joint pain but I have big time neropathy in my hands. Two days after treatment I cannot touch anything hot. I cannot even make fists with my hands because they hurt. They are really red, and the skin is cracking. Ouch!!!! This usually gets better in about 4-5 days. Also, my nose runs 24/7. It isn't a pretty sight.
    I have also noted I am tired all the time. What a crock. I come home from work and sleep. We want to be healed from this disease so this is what we have to put up with. I am not sure if these weird things are from the Avastin or from a combination of all of them. I just hope and pray the drugs are working for all of us! Terri
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    terril said:

    I am on CPT-11, 5FU, leuk, and Avastin. No joint pain but I have big time neropathy in my hands. Two days after treatment I cannot touch anything hot. I cannot even make fists with my hands because they hurt. They are really red, and the skin is cracking. Ouch!!!! This usually gets better in about 4-5 days. Also, my nose runs 24/7. It isn't a pretty sight.
    I have also noted I am tired all the time. What a crock. I come home from work and sleep. We want to be healed from this disease so this is what we have to put up with. I am not sure if these weird things are from the Avastin or from a combination of all of them. I just hope and pray the drugs are working for all of us! Terri

    Terri, when I was taking the 5FU part of the e-ticket ride, my skin hurt so bad, I had to learn to sleep on my hands and knees!. But, thankfully, it went away within 2 months post chemo....but now have tingles from the Taxol (same family, I think....5FU was replaced by this in breast cancer chemo).
    I share your hope, it sure is HE** during the ride!!!
    Kathi
  • slammer
    slammer Member Posts: 120
    #10
    Hi My Name is Amy, I too did the Avastin treatment along with oxiloplatin, & 5FU, and yeah I think I too had the pain from it but it didn't linger. I am 45 and yes now that I think about it I had severe leg pain & had to just lie down, I thought it may be the gamet of the whole thing, side effect are going to be there. But after reading your board, maybe that was it? I do think it does wonderful things because I was stage 4 colon ca and now since my last CT scan NED which is no evidence of Disease, after 2 surgeries and did chemo twice, a total of 13 months. So the good with the bad. but we are all different! and I am still real tired alot, (not like me to be like that) soooo.. I still think it is an amazing help. Best to you , Amy, aka slammer, write again & we'll discuss..ok Amy
  • scouty
    scouty Member Posts: 1,965 Member
    #11
    DURN....my side effects seem minor compared to some of yours and I stopped chemo because of mine. Stage IV, I did folfox (5FU, leucovorin, oxiliplatin) and avastin for 8 months. I took immunopower ez ( a vitamin/mineral supplemental product by the "How to Beat Cancer with Nutrition" author). I had the usual, cold stuff for a few days, some nausea, and alternating diarhea/constipation. The ones that really got to me were the neuropathy and the chemo brain. It got so I could not feel the balls of my feet hit the ground when I walked. I fell a few times and had to lean on things to walk sometimes. The chemo brain was horrid and 18 months later, it still is around, but not near like it was.

    I never had any pain though. I did not take any other drugs while on chemo other then anti-nausea a few times (the poisons in my bloodstream was scary enough). Because of the immunopower ez, low blood levels never threatened my chemo schedule.

    I don't think the docs have a clue what all the side effects of the various chemo drugs are. They may know what one may cause but what two or more combined will do is another story. And they sure don't know what mixing other drugs with chemo will do either (pain meds, blood boosters, etc. etc).

    But, since we are supposed to be so thankful to have the chemo drugs, we are not allowed to complain.

    Lisa P.
  • drmrgirl47
    drmrgirl47 Member Posts: 129
    #12
    Hi,
    I agree with Kanga. The same happened to me. I was so very active and never had aches and pains. Now, I wake up kind of stiff. Nothing to really be concerned about, but still, not the same. Also if I am very active during the day I tend to get very tired in the late afternoon. It's true, I don't believe I am quite the same after chemo and radiation. Love and peace, Annette

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