wow! that is strange huh? Dad isn't on any meds for the mds or prevention like that but he is now on meds for the shingles!

The discussion about shingles is very timely, thanks. My family Dr wants me to ask my oncologist about whether it's safe for me to have live vaccine (for shingles). Apparently so, but I will ask that question when I see him next month.

I'll be away for a week having fun with girlfriends. Keep up the good work, everyone!

oh I have such envy! lol have a great time!

Poshshorty,

I have to say that I agree with your assessment of "strange". They are treating your father for Shingles, but not MDS. What is their explanation for this?

The early onset Alzheimer's (I think that's what you said he had in another discussion) would explain lack of coherence. There will be days when it's more noticeable than others. Hopefully fewer bad days than good.

Sherry

he is 81 and opted for no treatment other than blood transfusions. so far he has had well ove 60 units and 2 plts. 11 of those were in July!

Thanks for letting me know that no treatment was your father's choice. I respect that. It's a decision all of us have to make.

I pray the shingles improves rapidly. I've heard it is very painful. God help him.

Sherry

Hello and best wishes to all. I'm starting my second round of Dacogen tomorrow at City of Hope. I've tolerated the first one pretty well. Some minor diziness and fatigue and a required seven day round of iv antibiotics.
We've been here for two months now and our daughter is looking after our home in New Zealand. My wife will have to go back in a few weeks for visa reasons, but I'm likely to be here for a while.
A couple of thoughts. When it's time to get a picc line installed.....get one. It's easy and much better than the constant needles.
Secondly Neupogen gets mentioned here sometimes. I would be careful about it. I was given some last May to get my Neutraphils up for a business trip in Greece. I hadn't had a bone marrow analysis done and my doctors thought I had MDS. When I did get the analysis in June, it showed a 50% blast count. I skipped right through MDS and landed firmly on AML. I wonder if the Neupogen may have grown some blast cells.
Again, best to all. I guess we are all still missing Chris.

thanks sherry. he only has one kidney so chemo was really not a good option. I would hate for him to go thru that and end up on dialysis as well. I just try to enjoy whatever time we have.

jonpg

I wrote about the Neupogen issue a couple of months back. It seems that doctors, like the staff doc I had in the hospital, who are not specialists have knowledge that this drug will boost your white cell count, which apparently it does. The danger, as you found out, is that it also increases the blasts which they apparently are not aware of as a high risk to MDS patients. I had told this doc and the entire hospital that they were to do nothing related to MDS/Cancer type treatments without clearing with my oncologist first. He insisted on giving it to me and would not call the doc so I told him to hold off. I called my doc, explained to the nurse the situation and within literally 2 minutes she was back on the phone telling me to make it very clear I was refusing the treatment and for him to call them. He never did sadly. The whole point is that we have to take the responsibility to be informed patients, ask about everything any doc wants to do, and if the slightest unsure clear it with our main MDS docs. I clear even dental work and other prescriptions with him to be sure there is no interaction or risk. He has told me to do this and it has worked out well on several instances just the one above being the most serious. Hang in there on the Dacogen. I've had 85 infusions now and though I don't have the port in they do put a three day IV in for the week of treatments. My side effects are much like yours in the fatigue, dizziness (though mine comes more from low BP), and of course taking care because of the low blood counts.

Take care I hope that helps some.

Mike

Hello all, I have been reading the posts but very busy working 3rd shift and then too tired to post. Glad to see everyone is communicating. I have been suffering from a stomach ailment called c. dificil which has been very difficult to get rid of. My MDS doc has been taking care of this issue. I see them tomorrow to have hemoglobin checked. I have also had swelling of some lymph nodes in the neck area that have not responded to antibiotics so we will decide if they need to do a body scan or biopsy as well as another bone marrow aspiration.

Mikeyti - I agree that we have to take charge and be informed. My family physician, while very good, was prescibing antibiotics for sinus infections and the swollen glands but this actually made me worse and allowed the c. dificil to run rampant. Apparently strong antibiotics kill off the good and bad bacteria which allows this infection to get out of control. My MDs doc is the one who diagnosed this for me. The oncologist also advised that in the future, i will be more susceptible to c. dificil with any antibiotics so be be very careful if another doctor wants to prescribe anything. I too now call them first for illness and then we decide treatment plans.

I hope everyone is having a great day. It has gotten cooler here in the Atlanta area which is a nice change.

Be blessed and wishing everyone to be in good health.

LaDawn

Mike....You are obviously right in all of your points. Alarmingly, the Haemotologist in New Zealand that handles MDS is different than the one that handles Oncology. I sensed that the Oncology specialist was not happy about the Neupogen.

I think the dangers of Neupogen growning blast cells should be more openly disclosed as a product warning. It's mentioned, but not loud enough.
Best of luck
Jon

Hi Everyone-
I just got a message that reminded me that it has been awhile since I last posted. I have been doing pretty well. My hgb is holding at 8.1, I have not had an infusion in seven weeks! I have now been on Revlimid for about six weeks. I am on a low dose-the Dr. started me off on 5mg every other day and now I take 5mg every day. The target is 10mg everyday but as the Dr. said, this is not a race. My WBC and ANC and Platelets are starting to drop per the Revlimid which in one way is a good sign and on the other hand scares the living daylights out of me. They are not too low just yet. My WBC is 3.2, my ANC is 1.86, and my platelets are 249. Revlimid lowers counts before it brings them back up. Hopefully counts begin creeping up very soon. I am still working everyday but I never realized how tiring teaching first grade can be....I am exhausted on Friday nights and Saturday mornings. My results for the bone marrow matches came back, they were only 9 out of 10 matches. I was very upset but the Dr. and the Bone Marrow coordinator made me feel much better by saying that if I were in a position where I needed a transplant tomorrow those matches would be used but because I am stable and doing well they want to keep looking for a 10 out of 10 match for me. That made me feel much better. My school is having a bone marrow drive for me on October 23. Whew, that was a lot of talking!!! I hope everyone is doing well. Please stay healthy and strong. xxoo

It's been a while since I've posted, too, Jeannine. I'm glad to hear that you're still in the running for a BMT.

I have no personal news to report until Tues when I see my oncologist. Has anyone (in the U.S.) experienced any changes as a result of new health-care rules? I ask because a letter to the editor spoke of a change in xfusion rules--Hgb level was 10, now 7 before approval by Medicare. That sounds pretty drastic to me. I'll be asking about changes when I see my Dr.

Birdmom,
I had not heard of that change for Medicare. I can believe it though. Wow! 7! I start getting shortness of breath around 9. I hope they leave it in the hands of the patient and medical providers.

Zoe

Jeanine
Wow a Hb of 8.1 is low, youre pretty amazing to be managing at the level. It just shows how different everyones ability to cope with this disease is. I really hope as you increase your dosage that your Hb improves and Im sure that your specialist will find a 10/10 match for you.

Birdmom
What an awful thought that they would consider transfusing only if you go below 7. I needed transfusions around the 84 mark. Im sure the medical world would be against such a change to your countries health system.

Just a quick update.....
Ive started my second cycle of Revlimid and so far I have responded as per expected. I now have a fabulous Hb count of 107, but a predictable low platelet count of 91 (Ive always been in the 200s). The nice surprise is that my nuetrophil count (ANC) is holding at 0.86. The only real issue I have is that fatigue is getting worse. Unfortunately its a side effect that hasnt yet improved for me and so my quality of life has not changed. The fatigue I experience is much more intense than when I had a low Hb. Im hoping after a few more cycles that it magically goes away. I still get bone and muscle pain but mostly its manageable. I do feel the impact of having a higher Hb as my thinking process is much clearer now. I suppose the objective other than increasing my Hb was to get the blast count down so Ill just have to live with the fatigue for the mean time. At the moment I really feel that Ive just swapped one problem for another. I have another week and half of the second cycle to finish and Im hoping to see further improvement.