Update on my brother Mike

menang
menang Member Posts: 35
Well, after 4 months of keeping the cancer at bay, a scan (and recent vomiting/pain) revealed that Mike's cancer was no longer responding to the FOLFOX regimen. We figured, since Mike started having a reaction during the administration of the platinum based drug being used. After being hospitalized for dehydration for a week, we met with the nurse who basically said "there's nothing else" they could do. Mike was feeling better after the fluids and basically said he wasn't ready to throw in the towel yet. Thanks to a wonderful doctor (Dr. Ma), he will be starting a new combo that includes an monoclonal antibody on Thursday. I'm not positive of the drugs in the combo, but will post what they are as soon as I get the paperwork. I do know that the tumor has to test negative for the KRAS mutation (condons 12 & 13).

We are so thankful to have a doctor who will honor the wishes of his patient. Mike's not done yet - and he is such a strong human being with a zest for life. He knows that this combo won't save his life and he is OK with just staying stable.

Blessings to all of you,

Maria
Sister to Mike, peritoneal adenocarcinamatosis with unknown primary.

Comments

  • stella65
    stella65 Member Posts: 152
    Fingers crossed for Mike
    So sorry to hear your news, this disease makes me so angry, its just so unfair, good for Mike for wanting to continue to battle with it, I really hope the new chemo is good for him, lots of love to you both X
  • menang
    menang Member Posts: 35
    stella65 said:

    Fingers crossed for Mike
    So sorry to hear your news, this disease makes me so angry, its just so unfair, good for Mike for wanting to continue to battle with it, I really hope the new chemo is good for him, lots of love to you both X

    Thank you
    Thank you. He really has so much fight left in him, that to have a nurse come in and say "no more" when there are still options that HE wants to pursue makes me so angry. Mike knows that there will come a time when he doesn't want to do anymore, but that time is not now.

    Best wishes to everyone fighting this awful disease,

    Maria
  • Best Friend
    Best Friend Member Posts: 222
    menang said:

    Thank you
    Thank you. He really has so much fight left in him, that to have a nurse come in and say "no more" when there are still options that HE wants to pursue makes me so angry. Mike knows that there will come a time when he doesn't want to do anymore, but that time is not now.

    Best wishes to everyone fighting this awful disease,

    Maria

    It's hard!
    He has that fighting spirit. I hope he keeps it. I mean mom wasn't ready to fight and she says if the cancer comes back after this part of the treatment she is not doing it again. When my mother has the carboplatin, which is aluminum based, it makes her alot sicker than when she has just the taxol, which is plant based. But they say the combo together is what kicks it.
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    It's wonderful Maria. Our
    It's wonderful Maria. Our thoughts are going out to Mike.

    For now,

    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    It's hard!
    He has that fighting spirit. I hope he keeps it. I mean mom wasn't ready to fight and she says if the cancer comes back after this part of the treatment she is not doing it again. When my mother has the carboplatin, which is aluminum based, it makes her alot sicker than when she has just the taxol, which is plant based. But they say the combo together is what kicks it.

    Hi,
    I have so far only had

    Hi,

    I have so far only had Carbo/Taxol together and found that I had no side effects except loss of my hair (which grew back) and in later treatments, tiredness and constipation which I could manage without much difficulty. It was also very effective at bringing down my CA125. But that was then. After about 9 cycles the CA125 started to go up again. At present, I'm on a break from chemo. The CA125 is still going up, 250. We're just waiting for me to experience a symptom, expecting it to be same as at the start, ascites causing me to have a distended stomach and a cough from the pressure on my lungs but so far no sign of that. Then we start on another chemo. He won't say which one yet. Must wait and see. Hard to imagine that I'll be so free of side-effects from the next one, but will take it a day at a time.

    I'm not ready to fight if the side-effects aren't worth it (but then the onc. is likely to try a different chemo). Perhaps they will try different ones with your mum too to find one that suits her best.

    Good luck for you and your mum.

    AussieMaddie
  • LaundryQueen
    LaundryQueen Member Posts: 676

    It's hard!
    He has that fighting spirit. I hope he keeps it. I mean mom wasn't ready to fight and she says if the cancer comes back after this part of the treatment she is not doing it again. When my mother has the carboplatin, which is aluminum based, it makes her alot sicker than when she has just the taxol, which is plant based. But they say the combo together is what kicks it.

    Clarification
    Best Friend: Just want to clear up some confusion you might have about carboplatin. That chemo is platinum based not aluminum based--maybe you were using a smart phone that "corrected" your typing. In any case, the platinum is a heavy metal that stays in the body for many years.

    I heard there was a shortage of taxol in the US--is this affecting anyone?
  • Best Friend
    Best Friend Member Posts: 222

    Clarification
    Best Friend: Just want to clear up some confusion you might have about carboplatin. That chemo is platinum based not aluminum based--maybe you were using a smart phone that "corrected" your typing. In any case, the platinum is a heavy metal that stays in the body for many years.

    I heard there was a shortage of taxol in the US--is this affecting anyone?

    OOps.
    Well, I honestly thought one was a plant and the other a metal. I do not know why i said aluminum. HA! Sometimes i have my blonde moments. I read a book on The Biography of cancer and it was shocking. I mean i never knew that one of the first chemos came from mustard gas. That is a poison. I know chemo has to fight these cells but who ever thought to try some of this stuff. I hate to say it but after reading that book which i would recommend to everyone, I have realized that way back in the day...they made so much progress. It seems like now they are making progress but if it weren't for the researchers back than, we would be really behind. You should see the type of mastectomies they would perform. They would remove ribs and all kinds of stuff and the woman would be disfigured, the upper body concave. Back in like ancient egypt they knew about cancer and started researching it. I mean, it just amazes me. So when people think we are at a stand still, just read that book. We have come sooooooo far.
    My buddy told me about the taxol shortage. I was very upset that this would affect my mom but she hasn't been yet. My dad asked doc and he said they are not having a shortage at the hospital she is treated at. Who knows! But yes, there is one!
  • menang
    menang Member Posts: 35

    It's wonderful Maria. Our
    It's wonderful Maria. Our thoughts are going out to Mike.

    For now,

    AussieMaddie

    Mikey is coming home...
    Unfortunately, Mike was admitted a week and a half after he started the new chemo regimen with another stricture. I think they may have started the new combo a little too late. He has decided to do no more treatment, and will be coming home with hospice care tomorrow. It was his decision and we will respect it. He is not giving up, but rather using the time he has left feeling well as opposed to being sick all the time. I still feel that if the cancer was caught earlier, he would have had a better chance.

    My heart goes out to all of you battling cancer...

    Maria
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    menang said:

    Mikey is coming home...
    Unfortunately, Mike was admitted a week and a half after he started the new chemo regimen with another stricture. I think they may have started the new combo a little too late. He has decided to do no more treatment, and will be coming home with hospice care tomorrow. It was his decision and we will respect it. He is not giving up, but rather using the time he has left feeling well as opposed to being sick all the time. I still feel that if the cancer was caught earlier, he would have had a better chance.

    My heart goes out to all of you battling cancer...

    Maria

    "He is not giving up, but
    "He is not giving up, but rather using the time he has left feeling well as opposed to being sick all the time."

    I understand and respect that very much. Much love to him, Maria.

    "I still feel that if the cancer was caught earlier, he would have had a better chance"

    The thing is that no matter what might have been, we are left to live with what is. We can only bring as much peace to that as we can to help our loved ones and ourselves through this time.

    I hope that you find strength also in your brother's strength of heart.

    Take good care,

    AussieMaddie
  • menang
    menang Member Posts: 35

    "He is not giving up, but
    "He is not giving up, but rather using the time he has left feeling well as opposed to being sick all the time."

    I understand and respect that very much. Much love to him, Maria.

    "I still feel that if the cancer was caught earlier, he would have had a better chance"

    The thing is that no matter what might have been, we are left to live with what is. We can only bring as much peace to that as we can to help our loved ones and ourselves through this time.

    I hope that you find strength also in your brother's strength of heart.

    Take good care,

    AussieMaddie

    Heaven's newest angel
    Mike passed away peacefully surrounded by him family and friends on Saturday. He was such a fighter. Although our hearts are broken, we know that he will watch over us until one day, we will all be together again.

    To all the cancer warriors, continue the battle - one day, we will win the war!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    menang said:

    Heaven's newest angel
    Mike passed away peacefully surrounded by him family and friends on Saturday. He was such a fighter. Although our hearts are broken, we know that he will watch over us until one day, we will all be together again.

    To all the cancer warriors, continue the battle - one day, we will win the war!

    I am so sorry to hear your
    I am so sorry to hear your sad news
    Tina xxx
  • Best Friend
    Best Friend Member Posts: 222
    menang said:

    Heaven's newest angel
    Mike passed away peacefully surrounded by him family and friends on Saturday. He was such a fighter. Although our hearts are broken, we know that he will watch over us until one day, we will all be together again.

    To all the cancer warriors, continue the battle - one day, we will win the war!

    Sorry
    Sorry for ur loss. It is devastating. I don't even know what to say really. I just know he made that right decision.
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    menang said:

    Heaven's newest angel
    Mike passed away peacefully surrounded by him family and friends on Saturday. He was such a fighter. Although our hearts are broken, we know that he will watch over us until one day, we will all be together again.

    To all the cancer warriors, continue the battle - one day, we will win the war!

    I'm so sorry ...
    I was holding onto his strength but at times losing the forest for the trees. I'm so sorry.

    Forgive me for getting off on the path when you needed more strength yourself.

    I will hold him in my heart and send love to you all.

    AussieMaddie
  • menang
    menang Member Posts: 35

    I'm so sorry ...
    I was holding onto his strength but at times losing the forest for the trees. I'm so sorry.

    Forgive me for getting off on the path when you needed more strength yourself.

    I will hold him in my heart and send love to you all.

    AussieMaddie

    Thank you,
    Thank you so much for your kind words. Mike made such an impact on all those he met. I love him so very much. Now, I will focus on my husband's stage IV mel diagnosis. Cancer is an awful disease, no matter where it started... and I will fight, til my last breath, for a cure....

    Love you all,
    Maria