Nitty Gritty on BMT

[jonelle]

Hello, hope that everyone is doing well…
My husband has received 6 treatments of Dacogen and is doing fairly well. Dr is now giving him the option of a BMT. He is set up for a preliminary consult at Shands in Gainnesburg, FL.
Does anyone know any of the dark details…such as – when a patient is in solitary confinement is there really no TV, nor any reading materials allowed? And does the patient get catheterized & colostomy bagged for the duration of the stay?
Someone told me this, but I think it is proposterous! Any info would be greatly appreciated.

[Mary4Mike]

Hello Jonelle,

I am sorry that I don’t have answers to your BMT questions. I do have to say that I would be surprised to learn that those things are true. Has your husband found a donor yet? I will pray that all will go well for him.

What caught my eye is that you are from Naples, FL. We spend November and March in Naples and love it there. My husband sees a Dr. Susan Morgan at Cancer Specialists there in Naples. Are you familiar with that clinic? She usually just administers whatever treament he is on at the time and does weekly CBC’s. We would be interested in knowing if there is someone close there that you have been satisfied with.

Take care and best wishes for your consult at Shands.

Mary

[jonelle]

Hi Mary,
I am very fortunate to live year round in beautiful Naples. (Except for the jokes…like what is the first thing you do when you find out you’re sick in Naples?…Buy a plane ticket!)
Luckily, we dis-proved that remark, although it was touch&go at first. His oncologist is Dr Morris at NCH. We really like him & his staff. Diagnosis & treatment plan was verified by MD Anderson(Dr.Beran)in Houston. Search for a match has not begun yet…but he doesn’t have any family members.
I’ve heard of the Cancer Specialist Center but am not vey familiar with it. Hopefully your Dr is compassionate & informative.
Best of luck to you & your husband.

[gj]

Jonelle

The dark details are not as dark as someone painted for you. I had an auto sct in 11/05 for mantle cell lymphoma and turned 57 right in the middle of the treatment.
During the isolation period, your counts go down, I ended up sleeping most of the time. Nothing tasted good, so my doc hooked me up with fluids and liquid nutrition. While I did have loose bowels, I had no rigging for bodily functions.
While I was isolated, there was a TV in the room. I brought books, cell phone, mp3 and portable dvd player. They preferred I bring them in when I came in. Heck I got a small, soft dart board as a birthday gift and we played darts in my room.
I did sleep alot, so didn’t do much ready and things until my counts started coming up.
Each person’s experience is different, even to the point where everyone told me that about day 7 I would develop mouth sores–never did.
If you or your husband has any other questions please feel free to ask.
Good luck to you both
greg

___
dx @ 56 with MCL 3/05 auto sct 11/05
dx with MDS 3/07 1 round Vidaza, 1 round Dacogen, round 2 begins 8/28

[jaxem]

jonelle
preposterous it is! that’s a new one for me. i don’t know if his bmt will be ablative (wipes out ALL cells) or non-ablative (partial wipe-out). the ablative is tough but he’s at an age that he can probably take it; doc’s decision. the kidney problem is probably the worst issue because the autoimmune drugs they put him on after the bmt is very toxic to the kidneys. Shands is a good place; so is Moffitt in Tampa. i wish him the best of luck!

[jonelle]

Thank you so much Greg & Jack. Your responses are very helpful!

[Jackie Jr.]

BMT is not so bad from what I am told. At MD Anderson you are kept in isolation but you have a family member in with you. TV, Phone Computer any thing that can be cleaned before you touch it. Lots of light in the rooms and I have had wonderfull nurses during my 3 surgery stays…Just remember that these nurses deal with very upset people all the time and a smile and thank you will go a loooooong way to makeing your stay better….Keep them happy and smile and they will be allot nicer…Your bitchy and then guess what…They get bitchy too…I know you may not feel good but be nice to your nurses..They are human too….Just smile and tell them that you are thankful that they are there to take care of you….Chocolate goes along way….It always brings a smile to my nurses.

Good Luck on your treatments…

Hang in there!!!

[txnmomma]

Quote:

Originally posted by jonelle:
Hello, hope that everyone is doing well…
My husband has received 6 treatments of Dacogen and is doing fairly well. Dr is now giving him the option of a BMT. He is set up for a preliminary consult at Shands in Gainnesburg, FL.
Does anyone know any of the dark details…such as – when a patient is in solitary confinement is there really no TV, nor any reading materials allowed? And does the patient get catheterized & colostomy bagged for the duration of the stay?
Someone told me this, but I think it is proposterous! Any info would be greatly appreciated.

I dont mean to spawn off a new topic.. but how is your husband doing on the Dacogen?

my father is likely gonna have a BMT soon. His brothers are being tested for a match. But I am curious to know about the Dacogen.

Please PM with any info..

[jonelle]

Hi Wendy,
From what the Dr says he has responded extremely well with Dacogen. His CBC numbers are far from normal. What puzzles me – is that when he was first diagnosed the Dr said BMT was “out of the question”. Now, Dr is all gung-ho for a BMT. I guess I was under the false impression that a BMT was the last resort. I know that it is the only way to be ‘cured’, so I am optimistic.
I am looking forward to what Shands has to say – I am trying to write down as many questions as I can to be prepared.
Best wishes to your Dad.

[Mary4Mike]

Hello Jonelle,

Did your husband have kidney failure after starting the Dacogen or before? How is he doing with that now? Many of these drugs are so hard on the kidneys that the doctor may be thinking long term cure vs. lifetime “treatment”. Also, the fact that your husband is young and would have that on his side in BMT recovery….I don’t know if there is an age limit for BMT. Our doctor has hinted that there is, but has never given us a number.

Keep writing down questions. We visited the transplant team at Karmanos Cancer Clinic in Detroit and these people know that there are a lot of questions that need to be answered.

Best wishes and keep us posted!

[jonelle]

Hi Mary,
When my husband was first diagnosed, he still felt fine (10/06). He mentioned to his oncologist that he felt bloated & uncomfortable. His stomach also appeared very distended. They took an X-ray or CT scan of him & discovered his left kidney appeared to be blocked up.(but his creatinine level & BUN were okay)
He was instructed to go to a urologist, who then preformed a biopsy thru the urethra(11/06). It was a nightmare! Not only did he not get any tissue, but it was discovered that the kidney wasn’t even blocked – that the reason it showed up dark on the film was because it was being pressed by other organs…The “out-patient” procedure had him hospitalized 2 days later with excessive bleeding & much pain & discomfort.
Needless to say, this was the beginning of all his problems. All winter long he was in & out of the hospital with other complications. But his oncologist doesn’t think the procedure had anything to do with it. That all his problems were due to the CMML.
At this point he is under the care of a nephrologist, his creatinine level & BUN & blood pressure are all critically high. He’s not on dialysis – but Dr seems to think that the damage is done & that the condition will not get better. Sorry to go on & on about this – but it will always be a question in my mind if the damage was caused by the urologist.
So to answer your question, kidney problems & high blood pressure started before the Dacogen treatments…
Thank you, Mary, for your words of encouragement…will keep you posted.

[Author]

Posts