t-MDS to AML

[Jeanette W]

Fist I want to give thanks to my higher power for guiding me to this site.

Over the past few days, I have done much reading on the various topics and discussion’s….. May I say thankyou to each member. I could truly feel the sincere compassion shared amongst each….. The overwhelming heart felt prayers and support….. And the abundance of knowledge to be gained from others. All Sharing together as a family.

This is my first posting….
In introduction, Name is Jeanette, loving wife and caregiver to husband Lee age 62 (Dx AML M5 5/07/05 ) ( Dx t-MDS 9/26/06 ) (Dx Erythroluekemia AML M6 11/16/06 )
I have never been a member of any support groups, or forums, this is all very new to me. Today however, I have felt compelled to come forward, out of the shadows, and become a member of this most special kind of family.

Today I am having strong emotional feelings for I take Lee to the Mayo clinic Phoenix in the Morning, Monday Dec.11th. to see Doctor James Slack. This will be his 3rd visit since first visit and BMB on Nov 6th. No treatment has yet to be given, only supportive care. I am fearing the worst but praying strongly for some positive hope. as this is not to be an overnight stay. He is on the BMT Doner list, his only sibling was not a match. We have already been told Clinical trials are out and now also Chemo. as his bone marrow is far gone. The only hope I believe still is a MINI – BMT. I pray that has not changed.

A short history ……

Husband Lee age 62 Dx AML M5 5/7/05 5/12/05 ICU, coma, system shutting down, ventilator AML was aggressive. advise was let him go gently. I pleaded for a small dose chemo to given to at least try and slow it down something please.WORKED following day things looked 100%better started good recovery. Has never had memory of the ICU. Finally full Induction Chemo, followed by two rounds of consolidation therapy of strong alkylating agents
no more consolidation rounds could be given for the bone marrow never recovered. Platelets with the help of Danazol has never reached more than the high 20K’s However successful remission we thought for 18 mos. despite pancytopenia of all three counts low Was not transfusion dependent during the 18 mos. Most boosters have helped his symptoms like B12 shots, aranasp, procrit, numega ect. to be at a livable level. Only the rare platelet or Red had to be given. A long first year struggle with two different vital ports each time infections causing endocarditis now another problem as plt to low for needed heart valve replacement. He gained back 20 of the 30 pounds he had lost back and after a year struggling was getting comfortable in living with the idea the counts may never recover. But, hey, still in remission he started wanting to live again to believe the AML would not come back. In July 2006 We began travel, he felt strong again. Both mentally and physically. We visited his mother and other family in England, driving like a mad man on the motor ways, he was young again. A great month to look back on now and cherish. Little did we know it was to be a short lived window.

In August 2006 we returned home to N.C.he started getting weekly nose bleeds we felt had got under control. In early Sept. his daughter in Kingman AZ talked us into a visit with her for a couple weeks, she had not seen her dad since he had been out of the hospital in May 2005. He still was ok but not quite as strong as in July.
1st day after arriving we did as his doctor in NC said to do schedule regular weekly CBC’s while here and remain on aranasp ect. 4days later we were blown when they came back and his plt 8K HGB 9 white 2.8. he received plt transfusion. 5 days later he had a severe nose bleed, took him to ER plt 4 HGB 7 white 1.6 things were not making since as he had never been this low what was going on. This continued till the end of Sept.every 5-6 days transfusions. His doctor was in NC no help I could not safely drive him home. The local Kingman Az cancer center a Dr. Mohtaseb seeing him suggested he do BMB 26th of Sept. results came back MDS less than 5% blast likely cause therapy related. No Leukemia transformation . We were relieved, lol not knowing at that moment what MDS was. We asked then why is he having all these problems with his counts dropping all of a sudden and becoming transfusion dependent all with in a matter of a short time. His response MDS was a bone marrow failure disorder. Well, that didn’t seem to be anything new to either myself or Lee as he has had a bone marrow disorder problem since July of 2005 after strong consolidation chemo. We wanted new answers not what we thought we already knew. I faxed a copy of the BMB to Dr. in N.C. so he could give us some guidance as to what was going on. 3 days No response. I called his office and pleaded with the office to get the message to him ASAP I felt desperate as Lee was getting worse losing lots of weight and not well. Lee had been put back in the hospital, I needed some help and advice from the one whom I felt had saved his life from the onset of the AML. I could not believe this was happening from someone we put some much faith in. No response. Lee was airlifted to LV for severe bleeding shortly after the Dx and the pleading for answers still from NC as to what to do. it had been two weeks since the BMB when the call from NC finaly came, by then for me to late I felt God led us to AZ for a reason. We had put to much faith in him and believed most anything Lee was told concerning his health and care. Here in Kingman, Lee has received wonderful supportive care from Dr.Mohtaseb He put us in touch with Dr. James Slack at the Mayo Clinic in Phoenix. and Called him personally on Lee’s behalf to try and help move things along.. I had already asked for a copy of the BMB for myself to do my own research while awainting Nov.6th appt. at Mayo.. To my horror this is when I found out what MDS was. finaly 2wks after BMB and DX I understood. I broke it down frontwards and backwards trying to learn all I could about this new illness. . find the most possible phase he was in. What I kept coming back to seemed impossible. How could Lee without warning signs be this advanced. I felt not yet high risk but not far. He has had CBC’s every week since july 2005 and I had felt, closely monitered. MDS was something we had never heard of or told could even be a possibility that his bone marrow failure could turn lead into. The only concern was centered on the AML returning.

Nov.6th.2006 trip to Mayo with Dr. Slack fully armed with all my new found knowledge of MDS. I felt Lee could be put on clinic trials drugs I had read about to help help his Tx dependancy, at least while awaiting a possible BMT. Well, I didn’t do to well with the diagnosis, Lee was already in the High Risk. Offered possible mini – BMT. Dr.slack ordered a new BMB before we left to make sure all was still the same as Sept.26 BMB. He triggered something interesting said he would also be interested in seeing the slides from the last BMB lee had in NC Jan.of 2006
Once home I requested a copy of Lee’s BMB report for myself not sure, however would be interested in some help on the possible findings I feel could have been the early stages of MDS feeling Lee may have been robbed of 8 mos. While clinic trials may have been an option

Nov16th. Trip to mayo results in t-MDS transformed erythroluekemia AML M6 with trilinage blast 30%

Lee has been declining rapidly since Nov.16 hopital 2 more times. transfusion twice week with CBC’s X 2 wk.

Dec.11th. Trip to Mayo will keep you informed.

Thanks to all and please any help or advise would be great.
pray God……..give us the strength to continue strong alongside our loved ones to encourage, Love, Hold, and comfort. Both in tears and joy

God Bless,
Jeanette

[Alice S]

Hi Jeanette
Welcome, I too am new here even though Mom has MDS for two years now. I will not dispense any medical advice, there are others with more experience here who will surely post soon.
What I can do is tell you to follow your instincts, keep and open mind and learn as much as possible. Ask questions and let the doctors know that you want to be kept informed. The more Mom and I learn the more we feel that we are on top of things and can ask questions and have discussions with the doctor and not just accept everything they say at face value.
You are having a hard time now, even harder than Lee so keep your chin up and remember there are a lot of us here who will be praying for you and Lee, have faith – however hard it may seem.
God is especially close to you at times like these, close your eyes and feel his warmth enfold you.
Alice

[KWJ]

Welcome Jeanette – sorry you have this issue too. My dad has the opposite of your hubby, MDS 1st now AML. It is a tough road. I can only wish you godspeed and hugs across the miles. This is hard stuff to deal with it. The only advice I have is take it one day at a time.

[willie]

Jeanette This is mental isometrics for you now – and there will be more to come. Continue to investigate what you can and enlist the aid of those who can help. It sounds like you are doing that. It is a tough road but one you have to be on now. All the best for both of you. Willie

[patti]

Jeanette,

The unfortunate thing is that one thing doctors don’t ever tell their patients is that the chemo they receive for one disease (be it AML or something else)can cause MDS down the road. My mom had early stage breast cancer and went through all the treatment and they never did tell her that. Now she’s watching as I take care of my MIL and she’s horrified that they didn’t tell her this could happen to her someday.

I’m sorry you’re now dealing with this.
Hoping your appt. went well yesterday. Hang in there.

Patti

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