MDS & headaches & alcohol

[Carole L]

Hi everyone,
I have RMCD diagnosed 2 months ago. Heading for Vidaza treatment in 2 weeks.

Am wondering if random headaches are common among folk with MDS?

Also haven't read anything about alcohol and MDS. Still enjoy my glass of wine on weekends. Comments?

Thanks
Carole

[bailie]

Sorry for your diagnosis. One glass of wine on weekends?

Many of us have gone through the Vidaza treatments. Questions are welcome.

[DanL]

Carole,

I don't think any of us want to meet through a forum about MDS, but welcome and good health to you. Since you did not post any of your blood counts, I can only speculate a little and give generic information that I have used.

Random headaches with MDS could be caused by low hemoglobin/hematocrit. If your red blood counts are low, it could mean that you are a little low on oxygen getting to the brain, and with exercise, exertion, getting up quickly, or any number of activities, you might get a headache or become light-headed for a moment or two, or three. This also seems to happen sometimes at bed time, after consuming caffeine, or potentially alcohol as the caffeine boosts your heart rate and alcohol binds to red blood cells reducing your oxygen levels.

As for Vidaza, I have been on it twice now. One time for 2 months prior to my transplant last year, and now for 6 months after a relapse in August. I have done quite well with Vidaza, but have noticed that I go through a pretty regular cycle of decreasing then increasing blood counts. For the first week (treatment week) counts are generally stable to increasing (this after the first couple of cycles), weeks 2 and 3 I approach a trough, then week 4 is back on the rise. This is my personal response over the past several months. Everybody is different.

As a result of decreasing platelets, red blood counts, and white blood counts throughout the cycle, I personally do not drink any quantity of alcohol. I have had a drink or two over the past six months, but almost always during week 4 of the cycle, after getting blood counts. The reasons - 1) low hemoglobin is amplified by alcohol as noted above 2) low platelets can lead to internal bleeding or poorer platelet function if you have an accident - like bumping into walls, which is a pastime of mine even without alcohol 3) reduced immunity due to low white blood counts - alcohol tends to further weaken immunity.

There is not a lot of evidence out there that a little bit of alcohol is harmful, it is just my choice to not really test the impact -

I think that you can work with your doctor to get more information and his/her opinion on the matter. I am not a doctor, just an MDS patient with 5 years of observation and practice on my body and its responses.

[riccd2001]

Carole: You need to watch what doc/med manufacturer say about side effects and restrictions. In most treatments, any alcohol consumption is a no-no!!

[tom30]

Alcohol exerts a direct toxic effect to the bone marrow. Google 'alcohol bone marrow toxicity'. I stopped all drinking any alcohol after my first bone marrow biopsy and my hematologist told me he thought I had MDS. I read a similar statement in a text book I was reading about Bone marrow conditions. I was drinking a few glasses a wine a week but stopped immediately. That was 7 years ago and I credit the nutritional and general guidance on this site to keeping my blood counts stable.

[Carole L]

Thanks everyone for your opinions and experiences. I will definitely not be drinking during treatment at all - that is a given.

Am one week away from Vidaza start date and as with all new adventures, my head is full of questions. Am I doing the right thing? Could I continue with just supportive care for a while longer? I feel so good right now that I don't want to feel lethargy and nausea....and so on.

Yoga and meditation are keeping me calm at the moment, but know I will have to dig deep to stay this way.

Carole

[bailie]

Carole, the sooner you start treatment the better. I was golfing (walking the 6 miles) all through the Vidaza ttreatment for eight months. I led a totally normal life throughout the Vidaza treatment. The Vidaza saved my life. My counts came back to normal and I was in excellent condition going into the SCT. It makes a significant difference to be feeling as good as possible. MDS doesn't seem to wait for anyone.

[Cheryl C]

Hi Carole

Here is a different viewpoint...

I have RCMD too. When my blast count dropped I decided not to go for immediate treatment because my body doesn't cope well with drugs. For me the decision depends on my blast count. If my blast count increased above 5% again I would consider treatment. While it remains within normal range I am comfortable on watch and wait which I've now been on for three years. I don't have any cytogenetic abnormalities. So far my results have remained quite stable, except for my average WCC which is my main problem. It drops a little more each year. Like you I feel quite well the vast majority of the time. I think that knowing what to do as soon as I sense an infection starting, along with a very healthy lifestyle and regular exercise, and my 4-weekly gamma globulin infusions, all contribute to my wellness.

If your problem is red cells or platelets and you have to have transfusions you might be at higher risk.

I see my haematologist every 2 months, and I have a CBC with LFTs and globulins included every 4 weeks. I use a spreadsheet to monitor the critical aspects of my blood tests myself.

It's not an easy decision and I wish you wisdom and courage for whatever path you take!

[Birgitta-A]

Hi Carole!
Like Cheryl I have RCMD and like her I only wanted supportive treatment during the first years. As you perhaps know the blast cells in the bone marrow are very important when you decide about chemo.

Do you have less than 5 % blast cells in the bone marrow - that means low risk MDS? Look at the algorithm from the journal Blood.

http://www.bloodjournal.org/content/...600&carousel=1

http://www.bloodjournal.org/content/124/18/2793

You can see that the lower risk patients with low HGB, WBC and platelets could try EPO drugs for the low HGB, G-CSF like Neupogen for the WBC and TPO-agonists like Promacta (not yet approved for MDS) before they try HMA like Vidaza.

In Europe Vidaza is not approved for low risk MDS - here they try other drugs like Thalidomide or Revlimid (about 30% of the patients will respond). The problem with Vidaza is that if the patient isn't responding or stops respond the patient have only few options like SCT or clinical trials left.

Hope you will respond to Vidaza if you start treatment!
Kind regards
Birgitta-A

[Carole L]

Thanks everyone for your comments, appreciated.

I am Intermediate Risk 2, so higher risk than most of the responses. Although my blast count is low at 2%, all three lines of blood show dysplasia.

I start treatment on Monday - nervous and hopeful that I will become the best I can be and that a donor will become available during that time.

Carole

[Cheryl C]

I hope it all goes well for you Carole. I also have dysplasia in all three cell lines, but my platelets and Hgb are still at levels that are not dangerously below normal. You are obviously in a different situation and I totally respect your decision. God bless and keep posting!

[Birgitta-A]

Hi Carole!
If you look at MDS classification at Marrowforums Home page you can see that we have Interm-2 if our IPSS score is 1.5 or 2.0.

Your blast cells are only 2% so you get 0 points for blast cells. To get a total score of 1.5 you must have poor cytogenics (chromosome aberrations) and get 1.0 points for cytogenics. Then you told us that all three cell lines show dysplasia but what they actually ask about is if at least two of the three cell lines show low counts (HGB less than 10.0, WBC less than 1.8 and platelets less than 100).

Like Cheryl I hope that you will have a positive response soon and no adverse reactions when you get Vidaza, so you can get a SCT and be cured.
Kind regards
Birgitta-A

[Carole L]

Thanks Cheryl and Brigitte for your encouragement and info. All appreciated.

Had had my first injection this afternoon and have 6 more to look forward to! Will know by tomorrow morning how the nausea will be.

Carole

[bailie]

Did they have you take a anti-nausea pill about an hour before injections? If they did be very aware of constipation from the anti-nausea pill after a couple of days, it can become serious.

[DanL]

Carole,

Good luck on this first round of Vidaza and all subsequent rounds. As Bailie noted, keep very well hydrated, drink lots of water, especially towards the end of the first week and into the second week. Reduce the amount of sodium and/or increase your potassium intake to counter the sodium. If the doctor ever offers anti-nausea like zofran or caitrol, i would lean towards taking it because it is harder to fight off nausea that has taken hold than it is to prevent it in the first place.

Here is to hoping for a successful start to your treatment path!

[Carole L]

Hi everyone,
I have completed cycle 1 and am at the end of week 2. Fatigued, short of breath (not bad) upon exertion but the worst worst of all was indeed the constipation from both the Vidaza and the Zofran. Ugh. There will have to be a proactive strategy for round 2!

Have had both one platelet and 1 blood transfusion and just got a call that I now need another. Ugh again. I know I know, this is what will happen for the first 2 rounds but of course I though perhaps I would be different.

Every hopeful that the treatment will turn things around and I will be the best I can be for a BMT. My only sibling is testing this week for a match and if no match, we wait and pray.

Carole
Happy to be out and enjoying an amazing Spring day in Vancouver!

[PaulS]

Hi Carole -

Glad the Vidaza went reasonably well - and a nice spring day in Vancouver sounds wonderful.

I just finished my third round of Vidaza - first day went without anti-nausea med - very big mistake. My doctor advised me to keep ahead of the nausea - and to eat prunes to avoid the constipation. Sounded very silly but she was right - When I eat a few prunes - no constipation. Maybe 3 or 4 - eating too many caused other problems Good luck and enjoy the spring. Paul

[Carole L]

Finished cycle 2 with no constipation and good energy. However my blood levels just keep dropping. I am now transfusion dependant twice a week for platelets and every couple of weeks for red blood.

Feeling very discouraged and wondering what else may be going on in my body.

Have been a fit gal coupled with amazing nutrition and very few drugs. Now my body is flooded with way to many and wondering if it is rebelling!

Trying to work through all the emotions, but wowsa tis a tough job. Feeling sad and bad for my partner as he is getting all the backlash.