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ALL w/Philadelphia Chromosome

vixen1003
Posts: 2
Joined: Oct 2004

Hello All,

My fiancee was diagnosed with ALL this past Spring. Orginally, we thought he would be fine after 12-18 months of treatment, but now we have discovered that he has the 'Philadephia Chromosome' which makes ALL more difficult to treat. Per his doctor he would have to have a BMT. Well, we found two B.M. donors and BOTH have backed out of the donation process, and so far we have found no others. Now he is severely depressed and has stopped going to the doctor. Instead he has began "alternative" treatments (i.e. Macrobiotics, etc) in order to heal himself. Please help me to help him.

Vixen

jeff_r
Posts: 3
Joined: Oct 2004

Hi,
I have ALL with Philadelphia+ Chromosome. I was diagnosed in Nov '01. Because of my age (now 57) I was never a candidate for a donor transplant. However, I did have an autologous transplant (my own stem cells were used). Because of the Philly+ I was able to be given a fantastic new drug called Glivec. It was developed for people with CML. However the Philly+ has similar characteristics so responds well to Glivec. I was told upon entry to hospital that I was hours or at best days from the point of no return. With Glivec I was in remission within 7days and have comfortably remained there ever since. I went through a fairly rigorous chemo protocol but truly, I'm laughing now!
I go to a hematologist for very regular check-ups. I have monthly blood tests and 6 monthly bone marrow tests which continue to turn up absolutely no evidence of the disease.
After conventional medicine did its bit I started going to a reputable naturopath. Aside from the occasional bottle of herbal mixture the only extras I take are a single daily dose of something called Thione Plus. It has a lot of B vitamins in it and, according to the naturopath, works favourably with my liver. Evidently the liver has a couple of functions and the Glivec interacts with one of them. The Thione keeps it all in balance. I eat as natural a diet as I can but I've never been able to control my sweet tooth or my desire for Sunday night pizza.
If there is anything else that I can help you with, please contact me. I have only become aware of this site in the last week or so. Living in Australia, the Leukemia Foundation just doesn't have this kind of internet site. I think that discussing our highs, lows, fears, joys, etc. is a very healthy and useful thing to do. I have been through the denial, anger and acceptance phases, etc. It takes a long time but supporting the person with ALL is such an important thing to do. There is definitely life after diagnosis and treatment but it is important to approach the whole ugly beast in a rational manner. Please get your fiance to speak to doctors and undergo conventional treatment. By all means go the macrobiotic way but only as a support to not in lieu of the others.
I wish you well,
Jeff

grommit
Posts: 1
Joined: Nov 2006

Hi jeff_r
I have just read your post and I am a fellow Australian. I was diagnosed with Ph+CML in August '05, I'm taking 400mg Glivec and have been doing really well as far as my CML is concerned, but I was very interested to read your information about Thione Plus as I have developed some liver problems that could signs of becoming intolerant of Glivec. I have been giving some thought to combining my conventional treatment with supplements to see if it might help. What do you think?
Thanks Jeff

tdon
Posts: 1
Joined: Aug 2007

hello thank you for your input i was diagnosed 8/07 with CML. The health care i have does not do bmt has put me on gleevic and in five months seem to be doing better however going for my 2nd bone biopsy end of month ( fingers crossed) i asked several docs about having a bmt and in this health care they say no? have you thought of this?

carolorjay
Posts: 2
Joined: Sep 2010

Hello,

My husband was diagnosed with ALL PH+ in June 2010. He is in good remission using Gleevec and Stanford University is considering a bone marrow transplant. We learned tonight that his sisters are not a match and his brother has not had his blood work done yet. My husband is 69 years old and he is in excellent physical health (almost laughable considering he has leukemia).

We are wrestling with the decision as to whether or not he should have the BMT. We have learned that the risks are great and there isn't statistical information out there because the disease is so rare.

So, if I understand you correctly, you have been taking Gleevec since 2001? How do you finance it? We have also found that many financial aid organizations do not have funding for this type of cancer.

My husbands blood tests have been fantastic. Once he was off steroids, his physical strength increased. Other than two hospitalizations, he is gaining strength and stamina everyday. We want to be hopeful that Gleevec will give him a long remission, but again, statistics aren't available.

Anything you can tell us to encourage or inform would be greatly appreciated.

Thanks.

mt51
Posts: 2
Joined: Feb 2013

Hi Carolorjay,

I hope you and your husband are both doing well.

My brother, 24, was just diagnosed with ALL Ph+ about a month ago and I am considering bringing him to Stanford Hospital for treatment. He is at USC medical center now, which is fantastic but I live in the Bay area and would be great to have him close by for ongoing treatment. Do you mind providing the name of the doctor? Do you recommend him/her? 

 

Thanks so much!

Marvin

 

mt51
Posts: 2
Joined: Feb 2013

Hi Carolorjay,

I hope you and your husband are both doing well.

My brother, 24, was just diagnosed with ALL Ph+ about a month ago and I am considering bringing him to Stanford Hospital for treatment. He is at USC medical center now, which is fantastic but I live in the Bay area and would be great to have him close by for ongoing treatment. Do you mind providing the name of the doctor? Do you recommend him/her? 

 

Thanks so much!

Marvin

 

Millie57
Posts: 1
Joined: Jan 2005

I was diagnosed with CML /Philidelphia positive Leukemia in January of 2003. Initially I was placed on Gleevec to normalize my cells. I was severely anemic and my white count was through the roof. The Gleevec helped me to return to a more normal life. Because my doctor felt my Leukemia put me at high risk to progress to a more advanced stage, he recommended a BMT. My elder sister was my donor. My transplant has put me in remission.
Before my transplant, I had contact with survivors who were treated only with Gleevec and were in remission that lasted for more than 5 years.
I was treated at the Cardinal Bernadine Cancer Center at Loyola University Medical Center in Maywood, IL. The procedure for harvesting stem cells is less invasive there. They gave my donor injections of a medication to draw out the stem cells from the marrow. She was connected to a machine by IV that filtered out the cells from her blood and replaced it into an IV in her other arm. She had little discomfort and quick recovery.
I'm not sure if this is why his potential donors backed out. It's a shame. You can only encourage him not to give up. I pray that he will seek out others who can encourage him. Depression is very common and overwhelming. I commend you for you efforts to help him. Seeking out contact with others was a great help to me in the early stages of my treatment. We'll pray for a donor to come forward and help him.
Encourage him to seek conventional treatment in addition to his alternative treatment. A positive attitude brings it's own form of healing. Help him to seek support from those familiar with his circumstances. Encouragement not to become isolated would be helpful. He is not alone and there are many who care about how he feels whether he knows them or not. Best wishes to you and your fiancee. Difficult to treat does not mean impossible.

Pray4Ashley
Posts: 2
Joined: Jul 2005

My 10 yr old daughter was diagnosed with Philadelphia Positive ALL just this March 2005.She is undergoing a transplant. She just finished her radiation & has begun her chemo.They told us her prognosis with transplant is 30-40%. We haven't met anyone with same diagnosis. I am happy to hear your story. Can anyone that has Ph+ write back? Was bmt difficult? We're at Childrens Hospital in LA, CA

Casey1958
Posts: 1
Joined: Aug 2005

To Pray4AShley - Did you hear back from anyone? My great-nephew had the same diagnosis when he was 6 years old, and underwent a bmt about 18 months ago. You can read about his progress on his website - www.supportcameron.com. Good luck to you!

ammc30
Posts: 2
Joined: Feb 2006

My Mom was just recently diagnosed with ALL w/Philadelphia Chromosome. She has been in the hospital for 3 weeks, she is on Gleevec and after intense Chemo will be coming home soon. They say she needs a BMT but none of the family is a match and are searching the BMT registry. I am sooo scared! She responded to initial treatment very well. Any advice?

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