GEMCITABINE WEEKLY CHEMO FOR BONE METASTASES

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Lily55
Lily55 Member Posts: 3,534

I just thought i would start a thread on here for this as the Taxol one was so helpful and supportive.

Just to exchange information and notes and mutual support....hope some of you want to join me

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  • Lily55
    Lily55 Member Posts: 3,534
    edited August 2019

    No one joining me?

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2019

    Sorry my friend. I have not been on this tx. Hope someone pipes up soon

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited August 2019

    hi lily!

    I’m not on this either. I didn’t know there is chemo for bone Mets. Have you started treatment yet and if so, how’s it going

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2019

    Hi, just completed second cycle of this (ie a total of 4 sessions) and apart from getting more pain 36 hours afterwards for a few days I am doing fine on it and actually feel stronger and that it IS helping me........

    BUT today was told I will be on it forever......until it stops working or I get more cancer.........so am still a bit confused.com

  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited October 2019

    I am joining you. I started Gemcitabine in August but due to a host of other things I have only had 4 sessions and have yet to complete a cycle. Next Thursday I start again and hope to get to complete the three weeks in a row. I am taking it as a 4th line I believe. My advanced cancer is a tumour entangled in the neurovascular bundle in the right brachial plexus which sounds like no big deal but the neuropathic pain just about became unbearable and in the pat two months I had a trial intrathecal pain pump in my abdomen with the catheter inserted up the intrathecal space of the spine. Enough for now but I really want to see what side effects I get. What has been your story Lily since starting?

    Marian

  • Lily55
    Lily55 Member Posts: 3,534
    edited October 2019

    Hi Mariane I have found it pretty easy by comparison to Taxol......I have completed 3 cycles but my cycles are two weeks on, one week rest and then start again....certainly this timing seems to help me.......I did get extra pain at first but now it seems to have settled.... and my hair has carried on growing!......

    I have neutropenia at the moment but also infected cellulitis but that was down to the nurse not being interested in the state of my legs two weeks ago meaning I ended up being sent to A and E by my primary care doctor again......

    Good luck hope this helps you and you get an easier time too xx


  • Lily55
    Lily55 Member Posts: 3,534
    edited November 2019

    Really struggling with this chemo now..... still can't eat normally a week on from last chemo and was in emergency room a whole day as so dehydrated.

    Feeling really low about it all

  • JFL
    JFL Member Posts: 1,947
    edited November 2019

    Hi Lily and Marian,

    Lily, I am glad you started a Gemzar only thread. Not many people are on Gemzar only. There is a Gem/Carbo thread but no active Gemzar only thread. However, it may be hard to find many others with bone mets only taking Gemzar. I have liver and bone mets and my problem is the liver mets. Bone mets are inactive right now.

    I started 2 weeks ago, 2 weeks on, 1 off. After 1st cycle, had extreme pain in my shoulder for a few days. The pain was so bad every time I would breathe I was actually crying which is shocking as I have a very high threshold for pain. The pain started about 36 hours after treatment. It lasted 2 days. I had a slight bit of nausea and fatigue in days 3 and 4. For the second cycle, my temperature jumped to 100.8 12 hours after infusion. However, it went down with ibuprofen and did not return when the ibuprofen wore off. Today, on day 2 after infusion 2, I woke up with raw, burned-like, red, painful skin on the palm side of my thumb and between thumb and forefinger, similar to a side effect I had on Taxotere. However, I am otherwise feeling good. I have a bit of pain in the same place in my shoulder but very mild and tolerable. I hope it stays that way.

  • JFL
    JFL Member Posts: 1,947
    edited November 2019

    Lily, I hope your side effects improve. You need to drink whatever you can keep down. Dehydration is no joke. I find ginger helps my nausea more than prescription nausea meds. I take ginger pills, ginger candy from chemo center or candied ginger from Whole Foods bulk section. If you don’t tolerate water well, perhaps some type of juice, a smoothie or simple soup?

  • Lily55
    Lily55 Member Posts: 3,534
    edited December 2019

    Thank you, I tried everything.......I am now 12 days on from last chemo and only now am able to drink and eat fairly normally.....I am going to refuse chemo on Tuesday as feel far from ok stomach still plus sore throat and really exhausted....every time I sit down I fall asleep.

    I have tried ginger in the past....will try it again....it's a shock as until this last time I was doing fine on the chemo...

    How are you doing?

  • JFL
    JFL Member Posts: 1,947
    edited December 2019

    Hi Lily, as mentioned, I have had 2 treatments now. I had to get my second one after 6 days rather than 7 due to my Thanksgiving travel schedule. However, I will have 2 extra recovery days on top of my week off as I readjust my treatment schedule. I felt a bit better this round as I had some pretty bad pain in my shoulder the first round which was not a problem this time. The nausea and fatigue seemed to be a bit better too than the first treatment. However, I have developed an odd rash on my elbows, like I have a large, round, red patch over each elbow. I did hear that rashes can arise in the first few cycles but usually subside after that. In my bloodwork the day of my last treatment (after only 1 Gemzar dose), I was shocked to see (a few days after treatment) that my ANC (absolute neutrophil count) went from being in normal range to .940 or something, after just one treatment. I read in the Gemzar instructions that that should require a dose adjustment to lower the dose to 75% of full dose but no one mentioned a dose adjustment to me and I don't think I received one. I didn't see my MO before my treatment. The way the dosing instructions are written, it is a bit confusing and I can see how someone would miss that. The chemo nurse ran my bloodwork and then compared it against the hospital's pre-established bloodwork thresholds for whether I could receive treatment. No one said anything to me. Lord knows what my ANC is now - possibly dangerously low - but I feel pretty good. My appetite is down but not gone and I am one to kind of force myself to eat a bit to avoid major malnutrition / low weight problems. I hate to look sickly (in other people's eyes, to avoid judgment) although I cannot completely avoid that with this damn disease.

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