patients in CT

[Maddie C]

Looking for support group in Ct. I have been stable for almost 2 years now and so far Docs looking at blood counts every 3 months. Trying to prepare for what is down the road. Thanks Maddie

[Beth I]

Hi, Maddie. I live in Farmington. I don't know of any support groups in CT but I love the idea of one. I have been in the process of being diagnosed for the last year and a half. Now it is firmly MDS with myelofibrosis. I have had several BMBs in the past year (which is hell with fibrosis), and my counts are all down, but stable with Procrit (WBC ~ 4; crit ~ 28; platelets ~ 75). I would be happy to share what I know.

Beth

[Maddie C]

Thanks Beth for getting back to me, this is such a lonely disease I sometimes feel very lost. I live in Shelton Ct. The Docs have taken a wait and see approach with me, I have been to Yale and to Sloan Kettering both came up with the same DX raeb 1 they said from every indication I look like a candidate for a transplant but beacause my counts are pretty stable they think it best to wait. My platelets are 318 and have actually been going up. I was DX almost 2 years ago and have had no treatment at all, I feel blessed because I feel like at least it buys time. I have Thalacemia minor an anemia that runs in the family so I am use too feeling fatigued sometimes. Where are you being treated? and how are you doing? Lets stay in touch.
Thanks Maddie

[Beth I]

Hi, Maddie. I am being seen at Dana Farber. My hematologist sent me there for a second opinion back in the summer of 2007, because he thought I had LGL Leukemia. The initial thought was wait and watch, along with the Procrit for the anemia (do you do anything for your anemia?). When I had a dip in my numbers earlier this year they had me meet with a transplanter, who was quite keen on scheduling me for a SCT in the fall. Essentially, I was left with the decision of when to schedule it. Since then, I have been to Memorial Sloan-Kettering and St. Vincent's in Manhattan. They both suggested that I continue to wait. However, i am also told that even though I am asking the right questions, there are not any studies with people in my situation which would suggest what I should do. I am concerned about the fibrosis (scarring of the bone marrow). It indicates a poorer prognosis. That makes me lean toward doing the transplant. I am thinking about this coming June. But I haven't committed to anything yet.

Who did you see at Memorial?

Best,

Beth

[Maddie C]

Hi Beth,

I saw Dr. Klimek at Sloan Kettering, they seemed to want to go with a transplant so I then decided to go back to Yale and talk with Dr. Seropian who I had met before and liked very much. He is the transplant doc there and I thought it would be better to be closer to home. But they surprised me by saying wait. I have 4 brothers & sisters but none were a match. I recently went on matchview and saw there were 34 potential donors when in 06 I had only 1, 90 per cent match. I have a blood test scheduled with my local hematologist soon so will see if he thinks we should do something different. I have nothing being done for the anemia as yet, my rbc, hgb and hct low but I can function. Can you tell me more about the fibrosis, how is that DX?
Hey have a Happy Thanksgiving. Thanks Maddie

[Beth I]

Hi, Maddie.

My Thanksgiving was the usual controlled chaos. I hope you had a great one, too.

The myelofibrosis has been developing over the same period that they've been watching the MDS. Essentially, it's the marrow becoming scar tissue. It makes it difficult to get aspirations when the do the bmb (mostly it's dry taps these days) and it makes the bmb itself unbelievably hard to do. My guy at Sloan gets on a stool and puts his body weight behind the instrument to get it in - lots of panting and sweating. I've been begging for conscious sedation and the docs there agree it is necessary, but they don't do conscious sedation for bmb there, so it has been difficult to accomplish. I have another one scheduled for 12/15 and will supposedly get conscious sedation. We'll see.

I hope you don't mind my mentioning this, but you might want to get another opinion besides Yale. I considered there, too, because you definitely need to consider proximity for a transplant. I mentioned earlier that I've gotten a lot of opinions on my situation and whenever I mentioned Yale the response was not so positive. It is primarily because the transplant unit is smaller and they have had fewer transplants than the bigger ones. The consensus seems to be to go with a larger unit. At least among the docs I've seen. Have you looked at the info on centers in the NBMTLink site?

Anyway, I hope I didn't offend you. I just know from my own need to get as much info as possible, that there are a lot of choices out there.

What does the future of your anemia situation look like? Is it related to the MDS or just a bad coincidence?

Beth

[Neil Cuadra]

Sorry to jump in with an off-topic post, but I wanted to put in another vote for conscious sedation.

Originally Posted by Beth I

HI've been begging for conscious sedation and the docs there agree it is necessary, but they don't do conscious sedation for bmb there, so it has been difficult to accomplish. I have another one scheduled for 12/15 and will supposedly get conscious sedation. We'll see.

I know that you already have enough to do and enough on your mind, Beth, but I suggest that you write to higher-ups at Sloan and tell them that you feel strongly that conscious sedation should be available to patients who have to undergo such tough procedures, and asking them if they agree that it's an important technique for pain management. We wrote a letter like that to the City of Hope hospital when it wasn't routinely available there. Now it is, and they told us the letter helped.

Conscious sedation requires an anesthesiologist, and that increases the cost, so insurance coverage may become a question. There's also a risk anytime anthesthesia is used. But our hematologist found that she gets better samples from sedated patients, so it can have a medical benefit as well.

[Maddie C]

Hi Beth,

Thanks for the info. I agree about sedation for biopsy. Yale does do it and made the bmb comfortable. I also had one done at Sloan and it was no picnic, the doc said I had very hard bones, my Hubby held my hand thru it all and I nearly squeezed it off. I think patients need to speak up about the concious sedation. As far as Yale is concerned please feel free to put your 2 cents in. I did see they were not doing many transplants especially with MDS patients. To be frank I have only seen them a few times since DX. I recently checked out Dana Farbers web site and it looked promising. The anemia I have is Thalacemia minor and they said it has nothing to do with MDS, my dad is 82 and has had it all his life. Please let me know how you are doing, are you still considering stem cell transplant? If so will you go to Sloan or Dana Farber? It all scares me so. I see my local Hematoligist on Friday.
Take care Maddie
Thanks Neil!!!

[Beth I]

Hi, Maddie. Glad I didn't say something wrong. I can sympathize with the "hard bones" thing - it's hell. I go back to DF the week after next and imagine we'll be having a hard conversation about my plans - either that day or two weeks after when I go back for the results. I had the same timing last year and the holidays were very stressful for me worrying about the results. I should have learned my lesson.

Since we don't seem to have found any other Connecticutlets in this forum, would you want to continue correspondence "off-line?" My e-mail address is bidjdj@sbcglobal.net Maybe get together for coffee or a gigantic martini some time and compare notes?

Have a great day,

Beth

[All4DK]

Beth and Maddie,

I am from Stamford, CT but my mother lives in nearby Ramapo, NY. I would love to talk to both of you to discuss this terrible disease. My email is all4dk@yahoo.com. Please let me know if you're interested in talking and comparing dx and doctors.

Thanks,

Joe

[susansr]

Dear Maddie C: did you and Beth I form a support group?

I live outside of boston and am currently being treated for aa at Dana Farber; are either of you still in treatment or free of disease?

I am only 3 weeks post ATG treatment, still in prednisone and tacrolimus instead of cyclosporine. Are you able to share any history of illness and recovery? Thanks, Susansr

[KatailS]

I know this is an old thread but figured I'd post in case there might be recent interest in a Connecticut support group. I am fairly new to bone marrow failures and live in central CT. Would love to be in touch with others who are dealing with, dealt with or a caregiver of someone with AA, MDS or PNH. Have been in touch with Beth I (and looking forward to a budding friendship). Beth's story gives me hope in my own story.

Let me know if there is interest. I do believe comfort does come in knowledge and support