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-   -   cute lymphoblastic leukemia Philadelphia Positive December 2016. BCR/ABL by PCR wa (https://www.healthboards.com/boards/leukemia/1048704-cute-lymphoblastic-leukemia-philadelphia-positive-december-2016-bcr-abl-pcr-wa.html)

Brucecava 01-23-2020 04:07 PM

cute lymphoblastic leukemia Philadelphia Positive December 2016. BCR/ABL by PCR wa
 
Name is Bruce question I have been following a few others on the cancerforum.net that have the same cancer as me. Went to log in seems that forum has vanished it had hundreds of users anyone know what happened to it?

I have cute lymphoblastic leukemia Philadelphia Positive December 2016.
BCR/ABL by PCR was negative for p210 and p190

Diagnosed Dec 16, 2017 Stem Cell transplant Feb 22, 2018 still taking Tasigna Nilotinib almost 3 years now.

Over the last3 years been through it all and then some but still alive.

My ALL is service connected presumptive disease from Agent Orange and Contaminated Camp Lejeune Drinking Water. My VA dealings it a LONG story bottom line if I did not have private insurance I would not be typing this now.

Anyway anyone know where the cancerforum.net went?? Want to keep in touch with some others that were on that forum.

PBLz 01-24-2020 04:41 AM

Re: cute lymphoblastic leukemia Philadelphia Positive December 2016. BCR/ABL by PC
 
Hi Bruce,
Unfortunately the cancerforums site has been shut down since December 31, 2019, and never to reopen. All queries are now redirected to these HealthBoards.
So far, only a few of the members from the old forum have shown up here - most of them from the Prostate Cancer group. I was myself in the Lymphoma group.
Given your history, I assume you wished to get in touch with Kermica, who has announced that he was not going to sign up here, but who knows? Your best bet may still be to post on here in hopes that he and others are lurking.
I'm afraid that's all the help I can provide at this point… Best of luck to you!
PBL

Brucecava 01-24-2020 05:48 AM

Re: cute lymphoblastic leukemia Philadelphia Positive December 2016. BCR/ABL by PC
 
Well was following someone I forget the name that just had the new cell altering treatment hope they are doing good and it is working.
Did not realize it was that long since I logged into the cancer forum I should have checked more often I would have helped to save it and I have hosted around 10 different vbulletin forums over the years.

For anyone suffering from Leukemia I am approaching my three year birthday come Feb 22, 2020. I look forward to wringing the bell on the 7th floor at the Hershey Cancer Institute however I will hold off till I have my next blood work on March 16th I believe it is. My Oncologist may discuss trying to take me off the Tasigna Nilotinib then but reading his notes from my last visit he said he may if my body can tolerate going off if it.

Not sure what he ment by that I have read that people who have been on Tasigna long term and stop the drug can suffer worse bone, muscle and body pain not sure why.

My 1st treatment at start was IV chemo treatments for days then had the stem cell transplant Feb 22, 2017. Many,many transfusions then after the stem cell transplant.

I was started on Sprycell 1st for around 5 or 6 months but that then shut my kidneys down was then in the hospital for 10 days and happy to say my kidneys started working again. I was then started on the current Nilotinib.

As of my last visit I asked my doctor if I could try to cut my anti rejection medicine back he said ok so been taking just one pill every evening so far so good.

As we all know with our weekend immune system we get sick easier and last longer I was just sick with some kind of Virus for three weeks almost gone now yes I did go to the DR three times to be checked out.

Hope all those suffering form cancer keep up the fight never give up.

If you are diagnosed with a VA presumptive cancer disease make sure to file a claim ASAP

Take care and God Bless Semper fi

abeucher 01-29-2020 08:12 PM

Re: cute lymphoblastic leukemia Philadelphia Positive December 2016. BCR/ABL by PC
 
I remember you from cancerforuns.net. I hope you are doing well. I wish I could get back my posts. I wanted to keep them.

Brucecava 02-01-2020 08:22 AM

Re: cute lymphoblastic leukemia Philadelphia Positive December 2016. BCR/ABL by PC
 
Thanks doing ok approaching my 3rd birthday Feb 22, but do not see my Oncologist till I believe March 17th then he may discuss taking me off or cutting back my Tisigna. From reading sounds like 50 percent chance my body will not tolerate going off it and 50 percent it will.
Never new half the people on Tanigna had such bad reaction PAIN from stopping it they had to keep taking it.
Not sure what he will say maybe cut it back we will see.

Hope you are doing good.


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