Irinotecan / Camptosar Clinical Trial

Discussion Board Forums Chemotherapy & More Irinotecan / Camptosar Clinical Trial

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  • #40702
    linda-z
    Spectator

    Thank you so much Darla and Marion. You both may be right a little bit. My husband doesn’t want to believe that something might happen to me leaving him to raise our son. On the other hand, he doesn’t understand when I explain the side-effects and it appears that I am handling it fairly well. He thinks of it as the flu or a cold that will pass quickly. Secondly, he has his own problems that he is dealing with right now and tends to become very selfish in that aspect. He turns inward and only wants to think about his particular issues with work and his family (other than his son and me) and other things he says are important. It may just mean he doesn’t want to think about me because that would be too hard for him. I just wish he wasn’t so selfish in what he does think about.

    I’m hoping that there will be a change soon. In a couple of weeks, we should know if the chemo. is doing any damage, and something is coming up that may help my husband as well. Time will tell.

    Today is a particularly hard day. I have to take our son to school for his kindergarten orientation! With not having very much energy to even lift my arms, I will have to summon all the strength I have to make it there. Then he has his final swimming lesson and graduation from that. At least I only have to sit and watch. And all this occurs after I work at my job 6 hours first.

    I’ll keep in touch. Thanks all.

    Linda

    #40701
    marions
    Moderator

    Linda…..I have seen this often. In fact, many of my friends support each other in areas where the partner is lacking. I have learned long ago that one single person cannot provide the other with everything needed. As Darla has mentioned, this is where we come in. Just lean on our community and enjoy your husband for the things he does best.
    Best wishes,
    Marion

    #40700
    darla
    Spectator

    Linda,

    First off, know that everyone here is behind you 100%. That said, is it possible you husband is having a hard time accepting that you have this cancer and this is his way of dealing with it by ignoring it and acting like everything is just fine? That wasn’t the case for me, but everyone reacts differently when faced with difficult situations. Just a thought. I have found that in some situations I too get more support here and from others who I have met that are living with the same loss that I have experienced than I get from some close friends and family who just can’t seem to understand. Atleast we know we have somewhere to go to get the help & support we need. Yes, please do stay in touch and let us know how things are progressing with this new treatment regime.

    Thinking of you and hoping for the best results.

    Darla

    #3884
    linda-z
    Spectator

    Well, I’ve had my second treatment of chemo in this clinical trial last Thurs. I haven’t posted about it before now because I just get through checking posts and get worn out, so I don’t post. This time I thought I would post first, then get caught up.

    This clinical trial bases your dosage on what gene-type you have. If your body processes the chemo. meds faster, you get a higher dosage. The purpose of the trial is to show that chemo really should be based this way rather than the typical height-weight calculation. My gene-type processed the chemo too fast and it didn’t stay in my system long enough to do damage to the cancer. As I look at my family history, I have longevity on my father’s side….the women (5 out of 10 kids) lived well into their 90’s and even one aunt lived until 102. They had very little illness and no complications with their health until the very later years. My father’s sister is now 86 and has no arthritis and no other health issues. She has fallen and broken bones, but heals very, very quickly. My problem I believe came about from other issues I had inherited from my mother’s side. (The men on my father’s side all smoked and had smoking-related illnesses).

    That said, we really can’t begin to understand why some get this often rare cancer and others do not. My only hope here is that this clinical trial and higher dose of chemo will help me. About 1 week after the first treatment, my hair started falling out. It is really thin now, and I probably have about 2 weeks left before I will probably have to cover it up (or cut it and wear a wig). I’ve shortened it, and found that I have a natural curl to it, possibly caused by the chemo, I don’t know. I was on 4 other chemo. meds (2 at a time) that I was told could cause me to lose hair and I had not. SO, this is kind of a good thing as I see it. Maybe by staying in my system longer this time, it will kick the cancer for sure.

    The other side effects are diarrhea (immediately after infusion, and delayed a weekj) and of course the typical weakness and tiredness. This time the tiredness is much more prevalent. Sometimes I’m amazed at how much I sleep compared with before. BUT as I said about the hair loss, this tells me that at least it’s there doing SOMETHING this time.

    I have CT scans scheduled for next week when they will see if this regimen is doing any damage to the tumors in my liver and lungs. When they see that it is (being very optimistic here), I will have 1 or 2 more treatments. If no change, they may opt for other treatments. The doctors seem very hopeful here too since I am getting almost 1/2 as much more dosage than would normally be given (500 mg is the norm, I’m getting 700 mg).

    Right now I need lots and lots of rest. My employer is being very supportive and allowing me to take the time off that I might need both for me and to take care of my son. My husband on the other hand, is not being very supportive. It’s funny how much I get from this website, as compared to what I get at home. My family (other than my husband) has been terrific through all of this, but my husband is indifferent. Sometimes I feel like I should just go on without him and make the best of it that way. My jealousy pops up when I see how much you all care for your families and they for you. I am so glad for this website right now.

    Thank you all for your support here. I don’t know what I would do without all of you. I’ll stay in touch. My best to all of you in your fight against this cancer.

    Linda

Viewing 4 posts - 16 through 19 (of 19 total)
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