Do you ever feel normal with MDS

[bailie]

Kyis,

What type of maintenance program do you have? My numbers were about the same as yours and they were talking SCT almost immediately. I am asymptomatic also and have felt good through all of this. I was immediately prescribed Vidaza (five cycles) followed by the combination of Vidaza and Revlimid (cycles 6-8) with a SCT in about three weeks.

[kyis]

Hi Bailie,
No drugs or maintenance. I don't even take cholesterol or bp meds anymore as number are normal now.
I'm messing with some herbs, juice, etc, but nothing serious. Not sure it is doing anything. Blast have been 8=9 percent. As soon as they hit 10 that is when the fun will start.

[bailie]

That is really interesting. I have been under the impression that MDS was a progressive disease that once started on a downward spiral could not recover on its own. My numbers were rapidly declining prior to starting Vidaza.

[jmajjb]

First NORMAL day in a long time!
I woke up determined to stop the dizziness. I decreased the amount of Vit B6 and felt great until about 1pm, then felt dizziness starting so I took an anxiety pill and I feel like I used to before this whole nightmare started! Yeah!
I am taking so many supplements and herbs and new diet that all could have been contributing to the dizzy feeling. I tried the B6 first as that is one of the possible side effects. I got a supplement list from Dr. Larry Bergstrom from Mayo Arizona and combined that with a list from my naturopath and have quite the cocktail of pills. Hopefully they are doing something...

[sbk007]

Originally Posted by kyis

Hi Bailie,
No drugs or maintenance. I don't even take cholesterol or bp meds anymore as number are normal now.
I'm messing with some herbs, juice, etc, but nothing serious. Not sure it is doing anything. Blast have been 8=9 percent. As soon as they hit 10 that is when the fun will start.

Do you see a hematologist regularly?. We don't see many people on here with 8-9 % blasts and wbc of .6 (Sounds low) with no treatment. Everyone is different though. I take it you have normal cytogenetics? Your Hemoglobin at 11.7 is probably why you feel fine. I guess your counts are stable and the blasts remain constant so its watch and wait?? Why do you say 10% the fun starts?
Sorry for all the questions just atypical and curious.

[usaf1125]

Originally Posted by jmajjb

I worry too much! Could someone explain night sweats? Does this mean getting hot at night? Dripping with sweat or just uncomfortable? Does MDS cause night sweats or is it a sign of AML? The hematologist always asks do you have night sweats? What is the significance? I have been waking more frequently and feeling hot but was thinking it was my anxiety. Could anyone explain who gets these and what they mean? Thank you!

Don't worry, they come with the MDS. Some nights I need to change clothes as much as 5 times., next night nothing.

[Neil Cuadra]

Originally Posted by bailie

That is really interesting. I have been under the impression that MDS was a progressive disease that once started on a downward spiral could not recover on its own.

That's not always the case. Spontaneous remissions have been known to happen. But they are rare enough that you can't avoid starting treatment if you need it.

[Cheryl C]

jmajjb - glad you are feeling physically normal most of the time even though your mind is struggling with the idea of MDS.

Sorry I can't remember if you have had a biopsy yet? That should confirm your MDS status (if you have MDS). If you have less than 5% blasts then you can possibly rule out MDS as the cause of your dizzy spells. I had dizziness quite a lot when my blasts were at 10% but not often since my blasts dropped below 5%.

Perhaps the combination of supplements is also contributing. Did you check with your doctor/naturopath whether you should be taking all those things at once?

Re Vi D3, I'm interested in your wondering about whether it could decrease platelets. I've been led to believe on this forum that it increases platelets, but this year I've often been quite inconsistent with taking my Vit D3 and my platelet count has improved!

[Mseth]

Originally Posted by Birgitta-A

Hi Mseth,
I am staying at my summer house and don't look att my pc so often - that's why I am late with my answer.

You know I never dare to take drugs like Tylenol because like all pain killers they can decrease platelets (other similar drugs are more dangerous).

Then I always want to know my "real" temperature - I control it every evening since I have had neupogen fever three times.

Besides your mother loses her appetite so she should not take Tylenol.

Ask her to continue to control her temperature and contact her doctor if you think it is too high or if she has other signs of infection.
Kind regards
Birgitta-A

Hi Birgitta-A,

Thanks for your reply. My mother seems to have a similar experience with Tylenol, her platelet count fell to 1.06 ref range 1.5 - 4.5, after taking Tylenol and receiving high dose fever reducing meds through IV. Now that she is off Tylenol, latest labs show a normal platelet count. Her previous count had me worried as she has multilineage dysplasia, her haematologist on diagnosis had mentioned that she may develop cytopenia in all 3 cell lines eventually.
Low grade fever persists, latest labs show high TLC. Seeing the doc tomorrow.

Enjoy the summer!!

[jmajjb]

Cheryl,

My BMB report says: although MDS cannot be excluded it is not favored as diagnosis, please exclude all other possible causes of ring sideroblasts.
The marrow is normcellular, normal genetics, no dysplasia, but has 25% ringed sideroblasts. The first hem. said it was a hereditary sideroblastic anemia. But Mayo hem thinks early MDS. I have no blasts. He wants CBC in 3 months. My last CBC showed Hgb 11.5, HCT 32.5, RBC 2.9, platelets 90,000. WBC has always run normal around 4.2 5o 5.
I did read the pathologist report from Mayo and it said the working diagnosis from BMB is maybe early MDS. But then the Dr. said to me it is MDS. But he said it is mild. So I don't know what it all means. I cried and cried and he said : it is not bad why are you crying? I said because I had read all the statistics, he then said he has many patients that live decades with this and not to worry. But of course I am worried... He doesn't believe in any supplements or vitamins even. So I see a naturopath who has been working with me- that is where all the supplements come from. I did scale back a little but really think there has to be some nutritional component to this so I don't want to cut too many things out.

[sbk007]

jmajjb,
I have yet to meet a doctor that really cares much about vitamins or supplements. I guess they figure if you eat right you'll get what you need. Most good Dr's rely on evidence based medicine and that stuff just isn't in the repertoire. That's where nutritionists come in, and some doctors that practice nutritional medicine but those are hard to find. You never mentioned platelets. Yours look low, not dangerously low so perhaps you can ask about that. I think your doctors would tell you if they thought something was seriously wrong. You saw 3 of them and none told you to be concerned. There's a lot of subclasses of MDS, and the stats that scare you do not pertain to you. Sometimes internet overload is not a good thing, and stress and anxiety is not good for the immune system.

[jmajjb]

I really wouldn't be so stressed if I felt normal but with that dizzy feeling I really get scared! I try not to read the statistics anymore but have tried finding people in my situation. Or the people he says live decades with no problems. I can not find these people! Why aren't they posting on any forums or blogs? I just want to find someone to talk to in a similar situation.

My platelets are consistently around 90 to 100,000 since blood testing started in Feb. 2014. He is not concerned as their is no bleeding, bruising or petechia.

I have had 2 really good days without dizziness and have kept MDS out of my mind much better but still wake up and realize that yes I have a serious problem I get depressed.

Yes all 3 Drs. have told me not to worry- I wish I could just believe them!

[usaf1125]

Don't let it rule your life, worry has never cured anything or changed anything. Live life to the fullest. My arthritis bothers me more than the MDS.
I repeat don't let it control your life, if any thing happens it happens. You can't control or stop it.

[kyis]

Originally Posted by sbk007

Do you see a hematologist regularly?. We don't see many people on here with 8-9 % blasts and wbc of .6 (Sounds low) with no treatment. Everyone is different though. I take it you have normal cytogenetics? Your Hemoglobin at 11.7 is probably why you feel fine. I guess your counts are stable and the blasts remain constant so its watch and wait?? Why do you say 10% the fun starts?
Sorry for all the questions just atypical and curious.

Questions are always welcome. Anything that helps us. Sorry for the slow reply.
Yes, see a hemotolgist every 3-4 months with blood tests usually once per month, sometimes every 2 weeks if we think thing are progressing too fast.
Yes, Normal cytogentetics. I actually had my blast drop from 9 to 4.5 once, but then back up. I've been told when you are younger that things can take off faster all of the sudden. They will start Vidaza when blasts hit 10%. Yes .6 is low, its the anc that is scary. They say I can go lower. I need to look into vidaza cocktail, I've heard much better responses.

[sbk007]

Kyis,
thanks for the info. Just goes to show you how different everyone is.
I'm glad you feel good and don't let it get in your way. You have the right attitude.

[jmajjb]

I may have found the cause of the dizzy feeling. I checked my blood glucose yesterday when feeling funny, it was 262. Today I did fasting blood glucose and it was 166. I have never been diabetic before. Does MDS have any correlation to diabetes. Does stress cause this? Has anyone had a similar experience? I do have phone calls into the Drs. and so far no call back.

[usaf1125]

I have no idea if there is a connection with diabetes. Stress is the killer, it can cause many problems. Don't let the MDS get you down, easy to say but ignore it. The only time I really think of it is when I get my CRT checked. I hope you have a long and happy life, don't stress.

[Caregive]

I was reading online last eve and saw there can be something connecting A1C to MDS sorts of things. A1C is an indicator of high glucose numbers over a period of about three months. It's the red cells that absorb a percentage of glucose and then when the red cell expires, the glucose expires with it. This if you live with too few red cells, it goes to reason the glucose would be higher. My husband is diagnosed with MDS, stable as far as we know. But his glucose reads normal on any one test but the A1C has gone up a bit. So we have an apt at the VA to discuss this. I don't know how many people have this situation.

Also in the paper today I read about benzene being in air pollution. Benzene is thought to be a risk factor for having MDS. And it said eating broccoli seems to cut the absorption of benzene. Research in other areas may help to understand MDS more.

[sbk007]

jmajjb,
Hi. What possessed you to take a glucose reading? Those numbers are high.
They usually check your sugars when they take your blood so maybe its just a bad reading. I hope so. Hope you get an answer and feel better

[jmajjb]

I work at a veterinary clinic and the glucose machine was sitting there and I got curious. The machine is accurate. I have Dr. appt. for Thursday to get to the bottom of this. Apparently, stress can raise blood glucose- the fight or flight response. And we all know I have been a little stressed out! I actually feel better and less anxious knowing this funny feeling that I have is probably the blood glucose and nothing to do with MDS. I just have felt so strange and no one else seems to have these symptoms...

[sbk007]

I guess the question is how high can stress elevate your glucose levels..
The numbers you posted as you probably know are high(very high according to the charts). I would think that when they pull your bloods they look at the sugar levels..I hope you get to the bottom of it at your appt. and it turns out to be nothing.

[Caregive]

Did you do a fasting check of your glucose? That makes a diff too. Do it before you eat breakfast.

[jmajjb]

Good news! Dr appt. this AM, fasting blood glucose today 110. Complete chem panel was normal. I got brave and ran a CBC. The best numbers ever since this nightmare started! Hemoglobin and HCT both up and ALMOST normal. Platelets still low. He does believe the glucose is stress related and I am going on a natural treatment- Trancor by Metagenics. Funny thing is that today I have no dizziness- could this all be my anxiety???!

[Neil Cuadra]

Congratulations on your great labs and non-dizzyness.

Having a reduced level of stress will provide a health benefit as well.

[sbk007]

>>could this all be my anxiety???!<<
Yes. You know people wind up in emergency rooms because of panic(anxiety) attacks everyday... Good to hear your physicians fasting test was a lot better than your self test and everything turned out well.