Hi everyone. I guess I'm not the only one who's been too busy to post lately.

My last count was amazing--9.1 Hgb--and I've been euphoric ever since. I'm feeling normal now on the gluten-free diet, too. I can't help but wonder if there's a connection to my Hgb count.

Elaine, that is interesting that you miss Dad so much more this holiday season. Guess it finally sank in that you won't have any more Christmases with him. But you know he's with you in spirit, right?

Jon, thanks for the info. It's good to know for those with hopes of a transplant. Your own health? Good?

Janet, be sure & let us know your status after your appointment.

I worry about our crew members who aren't posting these days. I always consider no news as bad news, even tho I'm basically an optimist. Becky Jean, if you're out there, please let us know what's happening. Sharon

Great interview this morning with Robin Roberts with GMA! She has done remarkably well thru her transplant according to her doctors. She mentioned about the bone marrow aspiration and said ouch! I know we all can relate to that! My oncologist said if my numbers weren't up tomorrow when I return then he would be doing one to see what changes are taking place in the marrow. Not really looking forward tomorrow. Just hoping the counts are up but in the end it is all in the Lord's hands.
Hope everyone has a wonderful day!!

Janet

Hi everyone!
Well I got good news yesterday at my appt. My platelets rose to 76000, wbc was 3.50 abd rbc was 3.86. The biggest surprise was my hgb it was 13.7! In October it was 12.0. It hasn't been that high in almost 3 years. Thankfully he opted not to do the bone marrow biopsy and said he would see me in 6 months unless I noticed alot of bruising or started running fever. He did take extra blood for a PNH test. He tried to explain what that was for but I think I would have had to be an oncologist to understand it. It said is was just routine.
Hope everyone is doing fine. Not alot of posts lately so hopefully no news is good news!
Blessing to all,
Janet

Hi to all our leaky boat crew,

My latest count was amazing. Hgb rose again to 9.8. From hanging around in the low 8's for months to this level is something I hadn't expected to see ever again. But glad to see it!

Sharon

Hi Everyone!

This is my first post on this forum.

I am from Philippines.

My father was diagnosed with MDS. He is 70 actually going 71 in few weeks. Thi was communicated to us by our hematologist yesterday. We were really devastated when we saw what was written in the bone marrow test, it says, either MDS or AML but the doctor said my father is in the border line of MDS and AML since clinically, it is still not considered AML.

My father is a Pituitary Adenoma patient some 24 years ago.

The not so good CBC results begun last August 2012 but at that time, he had then a pneumonia so doctor say it could be the reason. We have 1 pack transfusion then. By November 2012, he was hospitalized again, and we have 4 packs of transfusion then, again he had aspirate pneumonia, so there is still infection and we had blood smear and B12 folate test and everything is normal. In December 2012, RBC is still down but the doctor said the antibiotics for the pneumonia may not work yet so we had 1 pack transfuse then. By early this year, everything is already cleared, pneumonia clear, all other tests are good and normal but RBC is down, Neutrophins are down and Monocytes are up, and we had 2 packs transfused again. And doctor already advise for bone marrow aspirate and we were informed of it yesterday.

Now, the doctor advise to start medication immediately with Vidaza for total of 6 months. With my father's condition, he may not be able to take the other medicine as he said, but totally forgot what that medicine was. And he said most of patients now are taking Vidaza and has minimal side effects as he said. Well, I guess it depends on the person, and hopefully my dad can tolerate it.

I want to know your personal experiences on taking this drug. My father by the way weight 298 lbs, so kinda hard if he really become weak. Despite, his condition, he has so much appetite and I think that would help too. He loads himself with fresh fruits and green veggies.

He has lots of supplements, he is taking folic acid, CALMAG D, fish oil, vitamin C.

Also, I want to know if you are taking any supplements or even taking other alternatives in case. I read from one forum here in AML, there is one using certain alternatives to cure AML.

Thank you in advance and looking for your advises.

Arsyl F. Tolentino

Arsyl, welcome to our leaky boat crew. For myself, I cannot answer any of your questions because I'm not in the category that your father is.

Others who post here are on Vidaza, so hopefully they will check in soon and answer you. If your father is borderline AML, then it is serious business.

How about it, crew? Can you help her?

Sharon

Hi All,

Been a long time since I posted (back in Dec). But after reading back it seems not many of you have much to say either.

My clinical trial is over - in essence I flunked!! I lasted for 6 months so gave it a good try. First 3 months was just on Revlimid. Had BMB that showed basically no change. So continued with daily dose of Revlimid and added Vidaza - by IV for 5 days then off 23. Did that for 2 more cycles. When I was to start cycle 6 my counts were too low - wbc 1.8, neutrophil .5, platelets 39 and hgb 10.4 (always my best low count).

So I was off both drugs and came back every week for 4 more weeks and counts only improved slightly. Finally doctor said I was done, Took me off clinical trial on January 25. Now I'm back to watch and wait. Will see her next week.I am anxious to see what my counts are now that I am off everything.

Chemo drugs can be really bad. I guess feeling bad was becoming my new "normal." Didn't realize how badly I felt till stopping and now I am amazed to be feeling so much better now.

Obviously, if the reward is that your counts go up and you're better than it's worth the chemo. But that was not the case with me.

I don't regret being in the study because at least it's been informative that it didn't work for me. The combo drugs have proven very successful if your MDS is deletion 5q. But since mine is not, it did not work.

I am worried about Becky Jean also. My prayers are with her.

Arsyl - I can't answer most of your questions but I would hope that the Vidaza would work for your father. It was the combo of the 2 drugs that was so hard. My doc said that in the future if my counts warrant it, she will put me on Vidaza alone as it does seem to be effective.

My best to all of you in the Leaky Boat Crew - keep on rowing!

Sandy

I was on revlimid for about a year a a half and my red blood counts did come up and I felt better for awhile but then it stopped working for me so that ended. Then I started on Vidaza and did that for 13 months and it did nothing for me so that was it for that. It's been 2 1/2 years and I haven't done anything but get blood transfusions every 4 weeks.They want me to get a transplant but they haven't been able to find me a very good match. They say they will never find a perfect match because of my rare DNA so I guess they expect me to take what I can get or let the disease run it's course and I'll maybe have a year left. I've been doing this for over 5 years and my body is run down and I don't know if I can handle a transplant. I don't like this and having to make a decision like this. Sucks!

Lisa prayers out to you and the decisions you will need to make. Sandy sorry to hear the clinical trial wasn't for you. This is such a crazy disease. I am just in the wait and watch and have been there for a few years. My fear is the day when my oncologist says it is time to start treatment whatever that might be. In the meantime, I pray for all of us and whatever stage we maybe in.
Did anyone watch the 20/20 special last week on Robin Roberts Journey? I finally got a chance to watch it yesterday. I thought it was interesting and the show was just that her journey. When it was over though I was sorta sad that it really didn't tell people what MDS is about and the different effects it has on someone. I think they missed a great opportunity to educate the public on this disease. Anyway that is just my take on the show. I'm sure there are alot of different opinions. But I am thankful that Robin is doing so well because she does give hope to someone who may need to have a bone marrow transplant.
Hope everyone has a wonderful day!
Janet

I'd given up on hearing from the crew, so I was happy to see new posts. Part of the problem with MDS is that it's a large umbrella, & what works for one doesn't for another. One may have good Hgb & lousy platelet counts, while another has the opposite.

For myself, I suddenly took an upswing & have maintained it so far, 10.4 Hgb. R&W counts rise with it, at least for me. Nothing changed as to meds (Aranesp every other week), but I have made two significant changes for a different problem--mostly gluten-free diet & only an occasional glass of wine. I have no clue if the rise is connected to the changes, but it feels like a reprieve, even if it's short-term.

Sandy, I'm so sorry that the study didn't work for you. On the other hand, sounds like being off meds feels better. Lisa, sounds like you're damned if you do & damned if you don't. That's what you get for being a rare specimen. Janet, I didn't see the RR special, but what you said seems so basic; educating the public about MDS & what it does to the body is important. Even folks in the medical field look at me & ask "What's that?" Sharon

Sharon: it is true what you say about the medical field and MDS. I have gone to some doctors other than my oncologist who show concern regarding it and give me advice like staying out of the sun because that affects the immune system. Then there are those including my PCP who gloss over it like MDS is not important or anything too concerning or they just ignore it totally on my personal medical forms. Maybe because I am not doing any treatment yet they do not feel it is worth recognizing, but at the same point it bothers me that they push it under the rug like it is nothing. To all of us who have MDS regardless of the stage we are in, it is definitely something.
I am thankful for this group, sharing really does help.
Hope everyone has a great day!!
Janet

Hope everyone has a safe and Blessed Easter!!!

Janet

I haven't been on in awhile and thought I would check in. I hope everyone is doing ok! luv and miss you guys!

Elaine

Just checking in, hope everyone is well. I will try to check in here more often. I have been having terrible migraines since late October then had sinus surgery in December to try and help the issue and picked up a MRSA infection in my sinus cavity which i only just managed to get rid of about two weeks ago whew! Migraines are at bay now with meds and counts are holding. I am still watch and wait. Be Blessed!

Hi all!
Hope everyone has been doing well. I check periodically and it has been rather quiet lately. Nice and hot here today in Oklahoma. I am glad the cold weather is gone for a few months.
I have been strugging the last couple of months with fatigue and shortness of breath. I have always had both but recently it seems to be getting worse. Not sure what is causing this change. I don't go back for a checkup until July. Currently I am not doing any type of treatment, just the watch and wait since my counts aren't low enough to begin any treatment.
Any advice from anyone that has been struggling with this also.
Take Care!
Janet