A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 31

Thread: ALL Leukemia B Cell Phila positive

  1. #21
    Regular User
    Join Date
    May 2017
    Posts
    40
    acute lymphoblastic leukemia Philadelphia Positive December 2016.
    BCR/ABL by PCR was negative for p210 and p190 assays, but was positive for rare e1-a3 variant My age is 69 years young

    HI all glad you are all still fighting the fight, happy to report I am still tolerating the nilotinib after around 18 months now. Today is day 645 for me. I see my Oncologist Dec 10, 2018 again for blood work and checkup hoping the numbers are still good. I do have side effects from all my treatments but I am sure we all do but over all I am doing ok.
    I have also had other operations in the past and broken bones one thing I noticed about all this is that the treatment seems to make old injuries hurt more.

    My doctor seems to not want to admit that any of my aches and pains are caused by my treatment even though all the drugs side effects state they can cause muscle, joint and bone pain but what ever.

    If all goes as planned my doctor said we can be snowbirds again this year and Dec 27th we will leave PA and head down to Aransas Pass Texas for three months. Not sure of the DR will want me to get blood draw there or not guess we will see what he says Dec 10th.

    I sure hope you all stay inactive it is scary every time we get blood work waiting to hear everything is A-OK. may God continue to watch over us all. Semper fi

  2. #22
    Regular User
    Join Date
    May 2017
    Posts
    40
    Today I was reading about the side effects of Nilotinib think I have about 12 of them been taking it daily for around 18 months now. Noticed under common side effects it says, no blood pressure, no breathing and no pulse glad I do not have any of them.

  3. #23
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,466
    I have recently been pondering the list of side effects associated with the 20 anti-neoplastic drugs that I have received. This is not counting the 12 non-treatment related (prophylaxis etc.) drugs I currently take, or the 30 or so others that I have received over the past 10 years. Neither am I counting the various supplements which I currently take or have taken. I have apparently dodged more bullets than Neo did in The Matrix.

    I note that there is but a single "side effect" of not treating our cancer.

  4. #24
    Experienced User
    Join Date
    Dec 2017
    Posts
    81
    My husband finished Blincyto cycle 2 today. He did have a bone marrow biopsy Monday and we will find out the results tomorrow at his scheduled dr. apt. Brucecav, I hope your 12/10 appointment went well. I hope you both have a Merry Christmas and a happy healthy new year.

  5. #25
    Regular User
    Join Date
    May 2017
    Posts
    40
    abeucher, how is your husband doing hope good. I am still on Nilotinib almost 2.5 years now. I hope things are going good for you two. I found out yesterday I have 4 nodules in my one lung hope it is now Lymphoma have to call my cancer doctor nurse and talk about it with her Monday.
    Let us know how your husband is doing sure hope he is A-OK

  6. #26
    Experienced User
    Join Date
    Dec 2017
    Posts
    81
    Hi Brucecav! I am sorry to hear about the nodules - by now, I'm sure you've seen your dr. I hope all went well and you are getting the care you need.

    My husband is doing really well. He went through the ZUMA 3 trial and received his engineered cells on 2/1 of this year. He has been in remission since and for the first time since 2016. It was not easy but he got through it and is doing well. On the 29th of this month will be his 6 month bone marrow biopsy. OUr follow up will be 8/5. He seems to be doing well other then some moments of delirium (thats what it looks like) or maybe its remainder CAR T cells. We don't know.

    I have been writing on this forum since the beginning of the trial if you are interested in reading about CAR T, its on this Leukemia board( I don't know what this is called) and its titled CAR T. Mistakenly, I used lowercase letters and I cant figure out how to change it so look for "car t.'

    I really hope you,re doing well. Thank you for checking on my husband.

  7. #27
    Regular User
    Join Date
    May 2017
    Posts
    40
    So glad to hear he is doing better this all is so hard to go through. I know it has been very hard on my wife also I would have been lost through all this without her by my side.

    I hope he keeps doing good over all I am very, very lucky so far as my body has just been staying inactive. Guess the next step is stopping the chemo pills. Take care tell your husband I said HI. May God Bless you both.

  8. #28
    Regular User
    Join Date
    May 2017
    Posts
    40
    Question about the Phil + side of the ALL, those that have had brown spots on their bones how did you know this was happening. Just pain or did your blood tests show some sign that this was happening?

  9. #29
    Experienced User
    Join Date
    Dec 2017
    Posts
    81
    Hello Brucecav - James was having pain in is lower back. They ran all the usual labs but didn't see any leukemia. They continued to observe with a CT scan and could see something but were not sure so he had a PET scan. The PET SCAN showed a spot on each hip and one on his shoulder. He then had radiation and oral chemotherapy started.

  10. #30
    Regular User
    Join Date
    May 2017
    Posts
    40
    Thanks I forgot where I left that question just typed it again I will try and delete that one. I was wondering as I am having shoulder and hip pain also my ribs seem to hurt when laying on them. Guess I will talk to my Oncologist at the next visit about this. He always just seems to blame my pains on previous old surgeries. Have to ask the wife about the PET scan I never heard about that she is a retired RN so maybe she has. Hope things are going good for you both. God Bless

 

Similar Threads

  1. T cell ALL leukemia
    By Kennpriebe in forum Leukemia/Myelodysplastic Syndrome Forum
    Replies: 2
    Last Post: 12-16-2016, 09:52 PM
  2. Replies: 0
    Last Post: 02-16-2016, 10:49 PM
  3. 2 1/2 year old son diagnosed with ALL pre B cell Leukemia
    By SavingTreyden in forum Childhood Cancers Forum
    Replies: 6
    Last Post: 01-24-2013, 03:24 PM
  4. Just something positive to anybody suffering from ALL...
    By SkaKid123 in forum Leukemia/Myelodysplastic Syndrome Forum
    Replies: 0
    Last Post: 06-16-2009, 04:16 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •