[Carl]

Russ,

I too have finished 3 rounds but no appreciable improvement yet. My hemo said he will do a BMB after the next round. I have had xfusions about every two weeks which is about the same as before the Dacogen treatments started. So, I’m not sure it is working yet or not. My counts really go low about a week after the treatments and just about recover to pre treatment levels about the time I have another. Maybe I should suggest to the hemo that he wait another week or two to see if the improvement continues?

It is good to hear that your blasts are coming down since that means it is doing something positive in your case.

[Carl]

Below is another one that has cancer terms and definitions I have found to be a good one.

http://cancerweb.ncl.ac.uk/cgi-bin/omd?action=Home&query=

[Carl]

campbell,

Unfortunately the Revlimid did not work for me. I tried it at different dosages for a couple of months and all it did is drive my counts down to record low levels and made me feel terrible. Celegene claims only about a 25% success rate even with those with 5q- but I was not one of the people that had a positive response. Others have had a good response and even some without the 5q- chromosome defect.

Good luck to your husband, I pray it works for him.

[Carl]

vanguardsheet,

I was on Thalidomde for a year and I have been off of the drug for about 10 months now. I developed neuropathy in my fingers and feet/lower legs gradually while on the drug and it increased over time. Since I have been off the drug the neuropathy in my fingers has improved some but not gone away. My feet and lower legs have not recovered hardly at all. The docs say that it may recover over time or the nerves may never recover. I have been trying Alpha Lipioc Acid to try to get the feeling back but I have really just started so the results are probably some time away.

[Carl]

marylinda,

Don’t feel like a coward or overwhelmed because you have this disease and you have questions that remain unanswered. Make yourself a list to dicuss with the doc and be sure to take someone with you to keep up with the questions/answers. I have on several occasions recorded my visit with the doc on a small personal recorder with his permission just to be sure I remembered what he said to my questions.

If you are in remission the only way that can be confirmed is by a BMB. The ones I get are very painful too, so I opted for sedation that makes getting them a breeze. I have to be admitted to the hospital and they do it on an outpatient basis and I don’t feel a thing. You should insist on this as well.

Remember it is your body and your life, so you must take a proactive stance in your treatment and ask any question you have. If you are not getting the answers to your questions, change docs. or clinics.

[Carl]

marylinda,

My doc won’ give me a red cell booster like Procrit or Aranesp unless my HGB count is below 11. In my case the insurance won’t pay for it. The only way the docs can tell if your are in remission is to do a bone marrow biopsy/aspiration and have a patholigist give them the results. You are going to a center of excellence at DANA FARBER and there are several other treatments available now for people with MDS other than a bone marrow transplant. Keep your options open and ask a lot of questions here and to your docs.

[Carl]

I’m with Jerry. I have had three BMB-Aspirations without anything but a local anesthetic and they were really painful. I’m told my bones are extremely hard and therefore it is hard for the doc to ease into the bone/marrow.

Anyway, I am now having them done on what they call partial sedation. I get Demerol and Versed by IV and I don’t feel or remember anything. The Versed acts like a memory blocker and you may be awake, but don’t know what is going on. It is done in the hospital by a Pathologist (MD)on an outpatient basis.

It’s the ONLY way I will have any more BMB/Aspirations done.

[Carl]

Here’s a web site that tells you drugs and foods to avoid if your platelets are low.

http://www.itppeople.com/warnings.htm

[Carl]

bety,

Great that your husband is getting filtered and irradiated blood now. I have had cellulitus before in my arm and I know how painful it is. Hope it is about healed for your husband now. As you know it is real important to keep a close watch on any open sores or red places on your body that develop for infections and such.

I have been on preventative anitbiotics several times when my WBC count got real low. I don’t think they made my counts go down.

[Carl]

TEMBO,

My platelets have really rebounded to my pre-Revlimid levels (Feb 2006) and I am real happy about that. My WBC and RBC are still low and I am getting Neulasta and Aranesp to help raise those counts. I have been through 2 rounds of Dacogen-Decitibine and thankfully little side effects due to the treatments (5 days IV in Oncology Clinic).

I am getting another TX tomorrow of 2 units of PRBC since my HBG is below 8.0 but it has been two weeks since my last TX.

I suggest a proactive approach to this disease and good luck to your husband.

[Carl]

DHasey,

I have 5q- chromosome abnormality also and tried the Revlimid for two months at 5 mg and 10 mg and was forced to stop because my counts went so low. I felt terrible and had no energy. They really didn’t recover to the pre-Revlimid level and I finally started Dacogen treatments in August. My platelets have now recovered to the pre-Revlimid level and I am hoping that my others do as well.

My advice is try something else and don’t give up just because the Revlimid didn’t work for you.

[Carl]

Miloslav Beran, Professor of Medicine, is who I saw at MD Anderson. He took a lot of time with me, answered all of my questions and gave me what he saw as my options for treatment.

Be sure to allow two to three days in Houston for the tests and appointment because that is what it will take to get through the process.

[Carl]

Jim,

I just have a regular IV cathater inserted in a vein in my arm. It stays in for five days and is wrapped up so I won’t pull it out at night. Works fine for me and, like you, I really didn’t want a porta-cath.

Have a frank discussion with your doc and tell him how you feel about it.

[Carl]

Susi,

I ALWAYS get a flu shot and a pneumonia shot in the fall-early winter of each year. Flu-pneumonia can be serious and even fatal to people with compromised immune systems like us with MDS. I have had no reactions to the shots and I would encourage you to have your dad discuss the shots with your hemo/doc to make sure he is OK with the shots.

[Carl]

Russ,

I have had 57 units of PRBC, mostly within the last year. I was pretty much transfusion free for a year on Thalidomide. My ferritin count is just over 1300. My insurance pays 100% for the drug since I have met my deductable for this calendar year, but I can understand your reluctance to go out of pocket on Exjade since it is so expensive. The other medical choice for iron overload involves a cathater and a pump at night so I pretty well ruled that out.

[Author]

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