Advice - Dad has MDS diagnosis

[Sidhartha]

Hi All,

I wonder if I could ask for a little advice. I will relay all the information I currently have - I know it's not complete - but hope it's enough to paint a picture.

My Dad has been anaemic for about 18 months maybe now. After having many tests looking for a bleed somewhere (internally) pretty much the last test was a bone marrow biopsy. From that he was diagnosed with MDS.

Generally his health has been good apart from the anaemia. He's 70 years old.

The results I know so far are that he has had a blood count (I assume red blood cell count) of about 9.5 for a year or more now. Obviously it should be in the 14's. I also know he has between 10-12% blast cells in his bone marrow.

He has been put on Vidaza... 7 days on, 21 days off. He just finished his first cycle. Felt fine until about day 6, then had some quite serious (but bearable) side effects for 4 or 5 days after. Chills, little fever, loss of appetite, lethargy and pretty serious fatigue. After the first round his blood count fell to about 8.8.

As far as I know he's being treated by a haematologist.

I was wondering, what should we expect going forward? I'm a little confused because on the information page about MDS on this site it says 10-20% of MDS patients go on to develop AML. However, on Wikipedia it says 'most' MDS patients will develop AML. Generally the stats I have seen on prognosis', even with Vidaza, don't make for happy reading.

Also, I am wondering if it's worth seeking a second opinion? MDS seems quite a complicated condition. I am wondering if it's worth finding a haematologist or oncologist who is an MDS specialist?

Any advice or thoughts would be appreciated.

[Birgitta-A]

Hi Sidhartha,
Good that your father otherwise is healthy !

The figure 9.5 is his hemoglobin (HGB) - it is very important to follow his HGB, his white blood cell count and his platelets. Keep your own report.

It is not positive with 10 to 12% blast cells in his bone marrow - less than 5% is OK. This means that your Dad has MDS RAEB-2. Good that he is treated with Vidaza. Look out for infections that should be treated at once! Contol his temperature twice a day.

Different types of MDS have different risks of developing AML. Patients with low risk disease like RA have a very low risk while patients with RAEB-2 have a greater risk. If the blast cells increase to 20% the diagnose is changed to AML.

It is almost always best to be treated by a MDS specialist.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006, supportive therapy with transfusions, drugs for iron overload and Neupogen for low White blood cells until 2010. Thalidomide + Prednisone with positive results until July 2013. Now trying Revlimid.

[KathyM]

Hi Sidhartha-
I'd like to address your fathers vidazza treatment. My husband had the same treatment for 5 months. He did very well and his blast cells went from 10% to 5%.

As for your father not feeling well after the first treatment, the very exact same thing happened to my husband. Have your father stay very very hydrated particuarly about 2 days prior to the treatment during the treatment and about 2 days after the treatment. He should always try to stay hydrated but even moreso around treatment. He'll be surprised at how effective it is for feeling sick.

Actually my husband ended up in the emergency room after his first round. Every round thereafter he made sure to load up on water and gatorade and he never got sick again!

Good luck - your father is lucky to have a daughter like you!

[sbk007]

<<Also, I am wondering if it's worth seeking a second opinion? MDS seems quite a complicated condition. I am wondering if it's worth finding a hematologist/oncologist who is an MDS specialist?<<
Yes. Like Birgitta said. This is most important. Most general hematologists see a few MDS patients whereas the specialists see MANY. My hematologist sent me to a more specialized hematology expert that sees a lot of MDS patients.

Typically with Bone marrow biopsy there's an accompanying cytogenetic report. This is important in knowing what kind of MDS your dad has and the severity.

His other cell counts, White Blood cells and platelets are important to know as well.

9.5 HG isn't severe anemia so that's encouraging. He hasn't needed blood transfusions that's encouraging.
I've had 6 rounds of Vidaza and the first round left me tired and my White blood cells dropped but then they rose and the other rounds haven't been bad.

Like Birgitta was saying Vidaza tends to lower your counts at first including the WBC's that fight infection so be on the lookout for that. When your dads blood is tested they'll know what to do.
All the best.

[NLJabbari]

Hi Sidhartha,

You asked if a second opinion is a good idea. I believe so...I also think that if possible, being treated by a Hematologist that specializes in MDS is the best option or at least a doctor whose "specialty" is actually Hematology.

My son is being treated for Aplastic Anemia and the Oncology/Hematology Dr. that treated him for a little while made several bad decisions for him. It wasn't until we found a Dr. who "specialized" in Hematology that things started moving in the right direction. So yes, it does make a big difference. We found out that just because a Dr. may have a license in Hematology does not mean they have the experience especially in a rare blood-disorder disease.

Wishing your dad the best...

[Sidhartha]

Thank you all for the posts and advice.

Good news is my Dad is feeling pretty much back to normal today after his first round of Vidaza after a few rough days.

Thank you for the advice on how to deal with the Vidaza and the treatment going forward. I think a second opinion with an MDS specialist is important over the coming weeks.

I will keep everyone informed of progress.

Ohh, btw, for one poster, I am a son and not a daughter!

Many Thanks again and I wish everyone here good luck with their respective conditions.

[Marksa25]

Hi Sidhartha,

My father is 81 and was diagnosed with MDS about 4 months ago. His blasts were about 18% and he has chromosone abnormalities. He just completed his 3rd round of Vidaza and we think he is doing relatively well. Dehydration was an issue so I belive he is getting saline frequently and he is drinking a lot of water. Constipation was also an issue but I think they have dealt with that. His WBC have been all over the place (as low as .6 and then they bounced up to 11) so he is on Neupogen regularly now. His RBC and platelets have stayed pretty stable which is good.

He too has a 7 day treatment with a 21 day break. The week of the Vidaza treatment tends to be tough and usually he doesnt feel great for the following 2 or 3 days. Then he is seems to feel ok until the next treatment. We will do a bone marrow biopsy next month to find out if the Vidaza is affecting the blasts.

Unfortunately this is a very up and down process so you really learn to value each good day and do everything you can to be supportive on the tougher days. He checks his temp twice daily and when his WBC are lower, he stays away from public places. When he is feeling good, he rides his stationary bike and walks to tries to build up his endurance.

Best of luck to you and everyone... my prayers are with all of you.

[Sidhartha]

Hi All & Marska25,

Thanks again for your responses. Very useful information and insight.

My dad had a blood test on Tuesday, a week after his first round Vidaza and his haemoglobin blood count had fallen to 7.8 so they decided yesterday to give him a blood transfusion. 2 x 300ml (roughly 2 pints of blood).

Is this a normal part of treatment with Vidaza? Is it common?

Many Thanks

[Birgitta-A]

Hi Sidhartha,
Yes it is very common that all counts will decrease when a patient starts to take Vidaza. As I wrote before look out for low white blood cells. Every time your dad is getting an infection his counts can decease and he can get neutropenic fever or sepsis.

The posive effects of Vidaza seldom come after the first cycles. During these months he must try to avoid infections, eat well, get enough sleep etc.
Kind regard
Birgitta-A

[sbk007]

Lots of info at vidaza.com

[Tii]

Hello Sidhartha,

I took Vidaza last year for few cycles in the attempt to treat my MDS. At first I got them as injections but due to severe skin reactions it had to be changed to IV form. The side effects always came few days later and were no fun to deal with. I still have markings on my stomach where the injection site was. My blood counts also always crashed after treatment, that then resulted to blood transfusions, usually 1-2 units.

I was risk-2 and had to get a bone marrow transplant before it turned into full blown leukemia. Since the BMT in Dec2012 I have had to get more blood throughout the year as I recovered, and now I am struggling with super high ferritin levels because of the frequent transfusions. But I am MDS free!

All the best to your dad. Stay strong, there is hope.

Tii - 37 yrs old, MDS survivor (11mo old)

[DebS]

Great news and continued recovery to you, Tii.

Sidhartha,

By all means, get a second and even third opinion! This is a complicated disease and needs many "brains" to help with the process.

Best of luck to you and your father.

Deb

[Kathy S]

Sidhartha
My husband is 70 and was diagnosed with RAEB 2 in June. He was put on Vidaza (7/28). We have been very Blessed that after two treatment sessions he went into total remission. His blood work Monday was excellent. We know this is not a cure, but it gives hope and to see him functioning and enjoying life is such an important part of it. His attitude is so positive he had to keep telling me it would be ok and it helped me so much.
He is schedule Dec.4th at The Moffitt Center in Tampa for a his second BMB. and continue on to the transplant program. It is not easy, and the fear and stress of it is over whelming. Prayers and faith have helped me so very much.
I did start green juicing Organic fruits and vegetable right away and he stays on a regiment of vitamins and tea I have researched. If you have any questions please contact me.. I know his response is not the norm for everyone( I wish that it was) but all of us still take one day at a time.
Blessings to you. Kathy

[katgio50]

Kathy,
My husband is in Moffitt right now getting a transplant. His MDS progressed to AML so we had no alternative. So far he is doing very well. Who is your Moffitt doctor?
KathyG.

[Kathy S]

Dr. Komoraji (?). He is very well versed in MDS. Who is it that your husband has, how old is your husband, where are you staying over there and where are you from? LOL Just a whole lot of questions. So happy that your husband is doing well, the anxiety can really get to you over all of it going on.

[katgio50]

I am sorry that I did not reply to this thread earlier. I somehow missed it.
My husband is 74 and received his transplant on Nov. 8 at Moffitt. He had an unrelated donor from Germany. So far he has done quite well. Will be getting his BMB on Mon.
We are staying at nearby apartments which has worked out well. If I can answer any questions or be of any help, let me know.

Kathy G.
psA lot of Kathys on here!

[Kathy S]

Kat,
Hope all goes well with your husbands BMB. I understand a lot of matches come from other countries. My husbands background it Polish and Russian, don't know if that even matters. We were at Moffitt Wednesday for his BMB and waiting results. Even though his counts are all normal and he remains in remission at this time, doctor suggest to move forward to BMT> Please let me know how everything is going for you and your husband. Prayers with you.
Sincerely, Kathy

[Sidhartha]

Hi All,

Thought I'd just write with the latest about my father and ask a few questions if I may.

He's had 4 cycles of Vidaza now (5 days on, 2 days off, 2 days more), one per month. His first 2 cycles were pretty rough in terms of side effects. The 4th was noticeably the best and he pretty much cruised through it.

His counts generally drop in the days after a cycle to around the 7.9 - 8.1 range and he has had a transfusion after each cycle (usually 3-5 days after a cycle finishes). My dad's counts post a cycle are pretty much the same now as they were at the start, but his counts 3 or 4 days after a transfusion seem to be climbing... and have gone from 9 to 11.

He saw his consultant on Friday just gone. I am a little sceptical about my dad's consultant who is a general haematologist and not an haemo-oncologist or MDS specialist. His consultant essentially told my dad that the Vidaza didn't seem to be working and he'd expect higher blood counts after a cycle if it was. He said he's prepared to give my dad another 2 cycles on Vidaza before deciding it's not working and taking him off the drug. Apparently the drug is expensive and they don't like to keep spending money after 6 months because they assume it won't work!

Does anyone have any thoughts or advice on the scenario I've described above? What would you do if it were you or your father?

Is there anything to try if Vidaza doesn't work? I've seen some stuff on the net saying the chances of Dacogen working if Vidaza doesn't are about 3-4%.

Also I should mention I am trying to get my father for a 2nd opinion to a guy who seems to be regarded as the best in the UK... a Professor Mufti at Kings College Hospital in London. He's being very stubborn and resistant to a 2nd opinion but I hope to convince him soon.

Thanks for reading.

[Birgitta-A]

Hi Sidhartha,
Your doctor is right when he is trying Vidaza during 6 cycles - most doctors evaluate the effect after 6 cycles.

I Think your dad is responding since his counts 3 or 4 days after a transfusion have gone from 9 to 11.

In the UK they were very late when they approved Vidaza because they think it is expensive.

Your dad has high risk MDS and is 70 y o. He is otherwise healthy. If you were living in the US he could get a stem cell transplantation (SCT) but I suppose that in the UK it is like in Sweden - patients older than 65 don't get a SCT.

There are several drugs in clinical trials for patients when Vidaza isn't working - look at clinical trials gov.

If your dad accepted to see Professor Mufti at Kings College Hospital in London he should be getting the best possible care.
Kind regards
Birgitta-A