You are here

Newly diagnosed awaiting BMT

My 27yo girlfriend of 12 years was diagnosed with leukaemia in february of this year. Initially she was told she had AML, however after futher tests this was changed to AML philadelphia +. Subsequently she has been diagnosed with CML, which they believe went straight into blast crisis phase.

The whole case is unusual and worrying. she exhibited virtually no symptoms before admittance. no enlarged spleen, no night sweats or excessive tiredness. In december we both went on a 7 hour walk around london and I was more tired than she was! A blood test taken 6 months before showed no irregularities.

From Day 1 the Heamatology staff were pushing for a bone marrow transplant (which seems to be their speciality and preferrred choice of treatment). although no sibling match is available as neither he brother or sister were a match.

I am worried that other possible treatments are not being pursued as potential alternatives.
I also found out that after 1 round of chemo along with GlIVEC, she was in complete remission with a PCR of zero (undetecable).

I find it hard to accept that I must have over my childhood sweetheart to an extremely risky procedure, with questionable success rates. I am worried about the effects of this treatment (particularly the Total body Irradiation), which will leave her infertile and could even cause further cancers!

Surely this type of procedure should be a last chance effort when all else fails. Also with the many advance in molecular medicines (e.g dasinitib etc) i believe we should attempt to keep her in remission, rather than take a 1:5 cahnce of BMT related mortality.

Any advice would be welcome,

thanks,

mark

First

Y A H O O O !!! Y I P P E E !!!
Number 1192 in the Zero Club
Zavie

My best advice for your friend is to get to a CML specialist as quickly as possible. My choice would be Dr. Eduardo Olavarria at Hammersmith. He is also a BMB specialist and would not reccomend a BMB unless it was absolutely necessary.

# 1192 will be known as Mark and Charlotte's friend in my Zero Club list.

Contact me if you need more information.

Zavie

Zavie Miller (age 70)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.5 log reduction Jan/08
3.6 log reduction Apr/08
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem
YM: zaviemiller
Skype: Zavie Miller

Hi Mark,I understand your concern and worry. Given that she has responded so well to Glivec,I would suggest a second opinion and agree with Zavie that Dr. Eduardo Olavarria at Hammersmith Hospital might be a good choice. He is my doctor and I underwent a sibling matched 'mini allograft' in 2003... read my diary on home page. The study is open and recruiting and has had a lot of success without the risks of traditional transplant. However a donor has to be found before anything else.
I have sent you Dr. Olavarria's contact email. It might be a good idea to ask for a consultation.
best wishes,
Sandy