6th chemo today for husband-fear/anxiety

wifetojeff69
wifetojeff69 Member Posts: 46 Member
in Colorectal Cancer #1

Today is my husbands 6th chemo treatment, yay about half way done. The first 5 treatments have only been with the 5fu and today will be the first with the Oxaliplatin, starting with only 1/2 dose. They have held off due to nerve issues he was currently having. He (we) are petrified to start this new chemo. The last treatment he had with only the 5fu was very bad, not sure why it was so bad. He is really stressing about being more sick and the nerve thing. She said that he will feel it with cold more in his ears, throat hands and feet and she said it will go away after a few days. He keeps saying he just doesn't want to do chemo anymore and he seems to be in a worse mood as each treatment approaches. I hate seeing him go through this but I also don't want him to stop treatments although depending on how he does with the oxaliplating they may or may not continue with it. I just dont know what to do if he decides to stop altogether.

Comments

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #2
    Half-dose

    The half-dose seems like a real logical place to start.  I wish all oncologists would roll into it.  There are countless posts on the oxi and how to deal with it.  Reading them in advance was helpful to me.  When I picked up a frozen food and tossed it (luckily into the cart, not accross the grocery store) at least I had been forewarned.  Others can likely give more helpful comments as I quit the oxi after only one dose.  I am sure these are difficult times for all involved, but please consider that it is ultimately your husband's decision of what course of treatment to follow.  Best of luck in these tough times.

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    #3
    SandiaBuddy said:

    Half-dose

    The half-dose seems like a real logical place to start.  I wish all oncologists would roll into it.  There are countless posts on the oxi and how to deal with it.  Reading them in advance was helpful to me.  When I picked up a frozen food and tossed it (luckily into the cart, not accross the grocery store) at least I had been forewarned.  Others can likely give more helpful comments as I quit the oxi after only one dose.  I am sure these are difficult times for all involved, but please consider that it is ultimately your husband's decision of what course of treatment to follow.  Best of luck in these tough times.

    Thank you for your repsonse.

    Thank you for your repsonse. I know it is is choice but it's one that I really hope he does decide to do. May I ask why you stopped after one dose of oxy?  I think we may continue with the 1/2 dose for at least the next few and see how they go. We got home about 4 hours ago and so far so good, nothing with the oxy as far as neuroathy goes only the metallic metal taste seemed to be quite worse this as it started while getting the oxy and he always gets it with the 5fu.Thanks again.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Cutting the dose

    It's a good thing they cut the dose as that can make a big difference on how he feels.  Express your concerns to his doctor about his reluctance to continue treatment and see what they suggest. It's good to hear that he is half way done and he is now on the countdown to less.  Hope he gets some answers and feels better.

    Kim

  • shu273
    shu273 Member Posts: 44 Member
    #5
    Oxaliplatin- My experience

    My Husband had the following Chemo prescribed for stage 3 Colon Cancer following surgery to remove a tumor found in the ascending colon-right hemicolectomy.

    5FU or Capcetabine (pill) with Oxy for 6 Months. After researching and dicsovering the IDEA study we chose and completed the following plan. We went with Capcetabine over the 5FU pump. It is the same drug but in a pill form. Other countries with a more mediteranian diet have great success using the pill. Our diet is healthy so we decided to try it and had very little negative respose. The Oxy on the other hand was immediate with the Nueropathy symptoms and major fatigue. This also increases with each session. Due to the side effects and the following statistics we chose to discontinue the Oxy after 2 sessions and only do 3 months of Chemo (5FU/Capcetabine) vs. 6 months. 

    The IDEA study shows Oxy only adds a 5% edge to the Chemo plan with the 5FU offering the bulk of the advantage. The Nueropathy that Oxy often causes (according to the IDEA study) 3 Months 17% permanent nerve damage vs. 6 Months 47% permanent nerve damage. Our oncolgist agreed that the most important thing was to complete the 5FU/Capcetabine treatment and my husband probably would have quit early if he had continued the Oxy. Also, please read the IDEA study. It spells out the statistics of 3 Months vs. 6 Months and helped us make our decision to stop at 3 months. This was supported by our oncologist as well. If you have any additional question, please write back anytime!!

    Andrea-Wife of Alan

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #6
    wifetojeff69 said:

    Thank you for your repsonse.

    Thank you for your repsonse. I know it is is choice but it's one that I really hope he does decide to do. May I ask why you stopped after one dose of oxy?  I think we may continue with the 1/2 dose for at least the next few and see how they go. We got home about 4 hours ago and so far so good, nothing with the oxy as far as neuroathy goes only the metallic metal taste seemed to be quite worse this as it started while getting the oxy and he always gets it with the 5fu.Thanks again.

    Discontinuation

    I discontinued because I reacted very badly to the oxi.  Overall, as a 3b, chemo only gave me at most a 10% survival advantage.  I was uncertain as to whether I should do it at all.  After trying the oxi, I decided I would rather have a reduced life span (or reduced chance of survival) rather than deal with the side effects.  I did capecitabine alone for 4 months.  In retrospect, I wish I had done no chemo at all.  But each of us has different values and makes different choices. It is very much an individual issue.

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    #7
    shu273 said:

    Oxaliplatin- My experience

    My Husband had the following Chemo prescribed for stage 3 Colon Cancer following surgery to remove a tumor found in the ascending colon-right hemicolectomy.

    5FU or Capcetabine (pill) with Oxy for 6 Months. After researching and dicsovering the IDEA study we chose and completed the following plan. We went with Capcetabine over the 5FU pump. It is the same drug but in a pill form. Other countries with a more mediteranian diet have great success using the pill. Our diet is healthy so we decided to try it and had very little negative respose. The Oxy on the other hand was immediate with the Nueropathy symptoms and major fatigue. This also increases with each session. Due to the side effects and the following statistics we chose to discontinue the Oxy after 2 sessions and only do 3 months of Chemo (5FU/Capcetabine) vs. 6 months. 

    The IDEA study shows Oxy only adds a 5% edge to the Chemo plan with the 5FU offering the bulk of the advantage. The Nueropathy that Oxy often causes (according to the IDEA study) 3 Months 17% permanent nerve damage vs. 6 Months 47% permanent nerve damage. Our oncolgist agreed that the most important thing was to complete the 5FU/Capcetabine treatment and my husband probably would have quit early if he had continued the Oxy. Also, please read the IDEA study. It spells out the statistics of 3 Months vs. 6 Months and helped us make our decision to stop at 3 months. This was supported by our oncologist as well. If you have any additional question, please write back anytime!!

    Andrea-Wife of Alan

    Thank you for sharing, his

    Thank you for sharing, his side effects from the oxy have not been good. Thankfully since it was only a half dose he didn't get any neuropathy but he is way more sick this time, has felt like he has the flu now for about 4 days with a lot of nausea, no vomiting but he is miserable, oh and the fatigue and tiredness is ridiculous, he has slept the last few days most of the day and then at least 11 plus hours at night. He is very unsure if he wants to up the dose let alone do it anymore so it's something we will talk about over the next week. We were given the option of the pill however his oncologist said that people tend to get more sick on the pill and that it affects their hands and being that my husband is a mechanic he needs his hands right now. I am going to share with him your husbands plan. Thank you again I appreciate these forums so much.

    Also do you mind me asking if your husband has been cancer free and for how long? My husband was stage 3 also, pT4a and pN2a. I don't know if that helps but I am really curious. I read the IDEA study and it's very hard to understandbI think it goes by the different aspects of the stage 3 like nodes involved and such,  Thanks again

  • shu273
    shu273 Member Posts: 44 Member
    #8
    Alan, is just a little over 3

    Alan, is just a little over 3 months from his last and final chemo treatment. We stopped at 3 months a mentioned before. He just had his first bloodwork test looking at his cea-tumor marker. All was good. His first scan will be mid January. He was T3N1M0.

    We kept a day by day spread sheet of how Alan felt during treatment. We just referenced the spread sheet, and wanted to share a couple of points.

    First treatment, Alan became tired on day two and extremely tired by day 4 and 5. This lasted for 7 days, and then subsided until next treatment. Remember, Oxaliplatin has about a 7 day life, and your husband will probably rebound by day 8. Remember to drink a lot of water.

    No hand or feet issues until second treatment, and usually subsided by end of the 7th or 8th day. 

    By day 8, the Oxaliplatin and the Folfox has washed out of his system, and he will probably feel pretty good until next treatment. 

    The summary below was taken directly from the IDEA study and helped us decide to end at 3 months. Non-Inferior means shortening the chemo from 6 months to 3 months did not impact the statistical benifits from chemo but does lesson the health and symptoms/permanent nerve damage etc. Message me via messenger if you want to talk via phone. I am on FB - Andrea Faulconer :)

     

     Since patients with T4 or N2 cancers had a very similar, poor prognosis (3-year disease-free survival of approximately 60% vs. 80% for other stages), in an exploratory analysis, we investigated the effect of a shorter duration of therapy among patients at low risk (T1, T2, or T3 and N1 cancers, in 58.7% of patients) and among those at high risk (T4, N2, or both, in 41.3%) (Figure 1B). Among the patients with low-risk cancers, 3 months of therapy was noninferior to 6 months of therapy (hazard ratio, 1.01; 95% CI, 0.90 to 1.12), with 3-year rates of disease-free survival of 83.1% and 83.3%, respectively. However, among the patients with high-risk cancers, 6 months of therapy was superior to 3 months (hazard ratio, 1.12; 95% CI, 1.03 to 1.23; P=0.01 for superiority), even though the absolute difference in the 3-year rate of disease-free survival was 1.7 percentage points between 3 months (62.7%; 95% CI, 60.8 to 64.6) and 6 months (64.4%; 95% CI, 62.6 to 66.4) (Figure 1B, and Fig. S5E in the Supplementary Appendix). Of note, the interaction between therapy duration and risk group was not significant (P=0.11 for interaction) (Figure 2).

     

    Among the patients with low-risk tumors, 3 months of therapy with CAPOX was noninferior to 6 months, with a 3-year rate of disease-free survival of 85.0% versus 83.1% (hazard ratio, 0.85; 95% CI, 0.71 to 1.01). Even among the patients with high-risk tumors, 3 months of therapy with CAPOX compared favorably with 6 months but missed the noninferiority margin, possibly owing to the number of patients in the group, with a 3-year rate of disease-free survival of 64.1% versus 64.0% (hazard ratio, 1.02; 95% CI, 0.89 to 1.17) (Table S5 and Fig. S2 in the Supplementary Appendix). Independent of risk group, outcomes after 3 months of FOLFOX therapy were worse than those after 6 months. Among the patients with high-risk tumors, 6 months of therapy with FOLFOX was superior to 3 months, with a 3-year rate of disease-free survival of 61.5% versus 64.7% (hazard ratio, 1.20; 95% CI, 1.07 to 1.3). The results were largely consistent among the individual trials (Fig. S3 in the Supplementary Appendix).

  • wifetojeff69
    wifetojeff69 Member Posts: 46 Member
    #9
    Thank you so much for

    Thank you so much for explaining that to me I appreciate that, I just may take you up on your offer to talk. Crazy how here in our area (state) there are no support groups of any kind.

    So my husband's staging is (and I apologize if this isn't right I'm just taking it off of the paper we received) pT4a pN2a MX. All I know from this is he had moderatley differentiated adenocarcinoma, invasive through bowel wall and foaclly involoving the serosal surface with lymphovascular invasion. Surgical margins free of tumor, and 5 of 17 lymph nodes affected. We also keep a journal of each treatment and each day, it has helped so much, he will have a symptom and he'll ask did I have this last time or how bad and we go back and look and say oh yea you did ect. But this treatment the oxy has been very different.

    Am I right in reading that since his would be considered high risk the full 6 months of folfox is best? So reading through this the percentage of survival is very small. I'm still worried about him not being able to do the oxy, he does not think he can.. If I'm Among the patients with high-risk tumors, 6 months of therapy with FOLFOX was superior to 3 months, with a 3-year rate of disease-free survival of 61.5% versus 64.7% (hazard ratio, 1.20; 95% CI, 1.07 to 1.3). The results were largely consistent among the individual trials. 

     

    Thank you again this is helping a lot.

     

  • shu273
    shu273 Member Posts: 44 Member
    #10
    I am sending you a link to an

    I am sending you a link to an article that was very helpful to Alan (see below). Also, regarding the study-Capox is the Pill that Alan took Capcetibine and Folfox is the 5 FU pump. They have to use the word inferior if there is any difference no matter how small. In this case the differece was 1-2% dependng on the staging. The Oxy only offers 3-5% extra edge with the 5FU or Capcetibine carrying the biggest benifit. That is why our Oncologist agreed that giving up the Oxy to be able to keep on keeping on with the Capcitabine longer was the best decision. Alan did 4 months but that included lowering the dose on a couple of treatments due to lung reactions and I think skipping one treatment. I feel very certain that had we continued with the Oxy it would have made him quit much sooner, So for us we know we made a sound informed decision that we feel comfortable with and ultimately our Oncologist also supported.

    Please do message me and I will send you my number. I talked to a friends sister that I had never met but whose husband had been treated for Stage 4 colon cancer and was cancer free for almost 5 years now. Her experience helped us know to not panic about some of his reactions to the chemo and also know that it would peak after a few days and then be better. It is the not knowing that was the scariest thing for us. So, if we can help relieve some of your stress and fear or help you make informed decisions then that would be wonderful!

    We are here for you both.

    A&A 

     

    https://www.futuremedicine.com/doi/full/10.2217/crc-2017-0019#.Xdtea5qOSrA.email

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