My Journey this far with AA now MDS

[vickij]

This is my 1st post. I was so glad to find this forum. My problems started in Feb. 2012. I was really tired & my heart was pounding & everyone said I was pale. My Dr. sent me for heart tests that came back ok, he didn't order any more tests.
Two weeks later I went to Urgent Care & Dr. there sent me for blood work. They called an hour later & told me to get to ER because hemoglobin was very low.
When I got to ER they wanted to redo blood test because they couldn't believe my hemoglobin was 3 and I was able to walk. It was 3 and I had antibodies in my blood so they had to go to blood center to get blood for transfusion . I got 4 pints & had several tests that showed that I wasn't losing blood so I must not be making blood.
I was sent to a great blood cancer specialist & after 3 more transfusions & 2 bone marrow tests I was told I had aplastic anemia. I had treatment with atg (horse serum ) & was taking steroids & cyclorsporine . I was doing good until last month. I had blood work every month & my hemoglobin got up to 9. I didn't need a transfusion until last month when hemoglobin dropped to 7.I had another bone marrow test. Now they say I have MDS.
My specialist sent me to a transplant specialist. I should hear from him this week on what treatment he recommends.
As I'm sure you all know what a shock it was hearing that I had blood cancer. I can use all of the info & support you can give.

[Neil Cuadra]

Vickij,

I'm sure this is like nothing you've experienced before, but it sounds so familiar to me because it's so similar to my wife's story, which you can read here.

Like you, my wife was very tired, the doctors couldn't believe she was walking around with such low hemoglobin (yours was even lower!), she had blood tests and a bone marrow test, transfusions, horse ATG, a re-diagnosis with MDS, and recommendations for a transplant. She eventually did have a bone marrow transplant and fully recovered.

I can appreciate how shocked you must have been at each diagnosis, and how rapidly this must all seem to be happening. Do you have family members nearby to help you get through this?

I have a concern about one thing you said, that you are seeing a transplant specialist for a recommendation. It's seems very likely that a transplant specialist will talk to you primarily about a transplant, which means that other treatment options (drugs commonly used to treatment MDS, clinical trials, even ATG again) might get short shrift in the conversation. I hope you will hear about the tradeoffs among all of your options from an MDS specialist. Perhaps my concern is unfounded, but please be sure to learn about your prospects for a transplant AND your choices if you don't have a transplant, e.g., if no donor is available. And don't be afraid to get second or even third opinions to give you confidence in deciding how to proceed.

Good luck!

[Hopeful]

Hi Vicki,

Have your doctors done a complete differential diagnosis? What form of MDS do you have and what are the characteristics that led to the diagnosis (cytogenetic abnormalities, blasts, significant dysplasia etc.)?

[vickij]

Like I said I am new at this and don't know all the correct terms yet. My Dr is a hematologist & cancer specialist. He is the one I was sent to and has done the bone marrow tests & treatments so far. After last blood test and needing a transfusion he sent me to specialist for his opinion. I think this Dr. was specialist in bone marrow & transplants. This 2nd Dr was going to meet with his team of specialists and recommend a treatment plan. He called today. He said I now have 5Q minus syndrome, and 5th chromosome that I didn't have last year.
He said their recommendation is for me to take revlimid (not sure of spelling) and have my sister tested to see if she is a match for transplant. If she isn't he wants to start search for a match. He mentioned other meds & a second treatment with rabbit serum this time. He talked with my Dr also.
I have appt. with original Dr this Thursday and may understand more. Now I take cyclosporine 50 mg twice a day & 5 mg prednisone.
You ask about support system, I have my husband & several close friends & a lot of people from my church.
I am not sure what a differential diagnosis is. I do remember 5 % blasts. Their is just so much info to remember. Dr recorded everything he said & gave me the tape, which I haven't listened to yet. Thanks for your info

[Neil Cuadra]

vickij,

We can help you with the terminology. A "differential" is a test of your white cells to see how many are this type or that type. The types are usually called neutrophils, eosinophils, basophils, lymphocytes, and monocytes but are often abbreviated. The lab can do a differential test along with your regular blood tests if the doctor asks for it.

The differential numbers let the doctor (and you if you want to) compute a number called your Absolute Neutrophil Count (ANC), which is a rating of how susceptible to infections you are.

5q minus syndrome, also called MDS 5q-, is one of the "better" chromosome problems to have, if you can call anything about this disease "better", because it means that you are very likely to respond well to treatment with lenalidomide, which goes by trade name Revlimid in the U.S.

Having 5q- also makes it pretty clear that you have MDS, not aplastic anemia. I'd be surprised if they conclude that a repeat of ATG treatment is a better choice than Revlimid, but the doctors know more than us and sometimes surprise us.

Having your sister tested certainly makes sense. There's only a 25% chance that a sibling will be an exact match, but I hope that's the case.

I suggest that you keep ongoing notes in a notebook or on your computer. It helps to take notes during appointments (especially if someone else can come along to take them!) so you can remember what was discussed and any instructions the doctor gave you. Too often, appointments rush by and then we say "wait, what did he/she say?" to ourselves.

If you ask for copies of your CBCs (complete blood count tests) you can track your blood counts over time, and you'll see the differential numbers show up on the report if the doctor ordered that test. You don't have to keep track of every word everyone says, just the main points, but the longer you're at it the more it'll start to make sense.

Anytime one of my wife's doctors mentions a medicine I don't recognize, I interrupt them and ask how to spell it. That way I can look it up after the appointment and learn what it's for and what side effects it has. A lot of drugs have scientific names (e.g, lenalidomide) and brand names (e.g., Revlimid) and as you read you end up learning both. Search for either word in these forums and you'll find discussion about them.

[vickij]

Thanks for the help. I guess I should have been asking more questions all along but like I said I hadn't had any problems since the horse serum treatment 1 yr ago.
I see my hematologist every month with blood work done the day before. We go over my results and he said he is impressed with all the numbers, except hemoglobin never got over 9. He had mentioned marrow transplant before the last marrow test that showed MDS.
I think he wanted me checked due to my age , I will be 60 in June. I have no other major health problems other than bulging discs in my back.
I had the ATG at St Vincent hospital in Indianapolis.
It is my understanding that marrow transplant is the only cure. Is that correct ?

[Neil Cuadra]

Yes, a successful transplant can cure AA or MDS, because the faulty marrow is replaced, and there is no other cure. But a transplant isn't the solution for every patient because some patients can't find a donor, some go into remission with ATG for AA or other drug treatments for MDS, some patients need only occasional transfusions, and some live just fine with slightly depressed blood counts and no treatment at all. On rare occasion patients go into remission without treatment. In all of these cases, the risks of a transplant (which increase with age) can make a transplant a less good choice.

[vickij]

I was told today that IU Med center in Indianapolis, In is the only hospital in my area that my insurance will pay for bone marrow transplant. Anyone have any experience with this hospital ?

[sstewart09]

No experience there, but we're from the Chicagoland area and there are a bunch of reputable transplant centers out this way. Not too far from Indy if you can travel a bit.

[Hopeful]

Hi Vicki,

Actually, by "differential diagnosis" I meant did they test for other things like vitamin or mineral deficiencies, viruses, etc. Given that they have found a 5q deletion now, this probably doesn't matter.

I am curious why you still take prednisone and why you are (were?) on such a low dose of cyclosporine. 5mg/kg of body weight/day is the typical therapeutic dose. However, this may not matter now either...except that you did initially respond to IST...

[vickij]

I am so glad I found this site because this is all so confusing.
I saw my hematologist/oncologist today .They are trying to get me on Revlimid . My ins. will not pay anything on it , they are checking with the assistance program to see how much they would pay. I thought I would get a prescription, have it filled and start taking pills. Guess it has to come from specialty pharmacy if I can afford it .Nothing is easy with this disease.
If I can't get revlimid he will do the ATG again ( hope ins. will pay for 2nd treatment) while they look for marrow donor .
Not sure what all has to match in donor, I know it tissue match not blood type.( I am O neg. with antibodies ).
Thanks for letting me vent. I just want to feel better. I ache all over and take hydrocodone , which Dr wants me to cut back on.

[Neil Cuadra]

Insurance problems - what a headache. I'd hate to hear that your treatment was determined by insurance coverage and not by the medical recommendation. Perhaps they are taking care of this for you, but if not you you can go to the Celgene Patient Support website and learn about Revlimid availability.

There's a science to matching donors to patients, but you know what? You really don't have to know the details! The treatment center will test your sister to see if she's a match, and they will also work with the National Marrow Donor Program to see how many people in the bone marrow registry match you. You can bite your fingernails wondering what the outcome will be, but you can't do much about it other than wait.

(Having said that, I suppose I should mention that patients looking for donors sometimes organize bone marrow drives to get more people registered as potential donors, particularly within their ethnic group or original country of origin. That's a great community service for ALL patients in need, but it's a very unlikely way to find yourself a donor.)

[vickij]

Thanks for info .I have had a lot of people ask me if they could be tested to see if they could be a match for me. I know there would be very small chance they would match me but they might match someone else.

[vickij]

Yeah ! Today I was approved for revlimid. Nurse was on phone all day getting me approved, then they called me at home with more questions. I do have to pay hefty co-pay but if it helps I don't mind.

[Neil Cuadra]

Congratulations. Do your stuff, revlimid!

My wife is lucky to have excellent insurance. We always had copays but they covered all of her treatment for years, as well as our consultations for second and third opinions. For some reason they even paid for me to be tested as a potential bone marrow donor, even though as a non-relative with a different heritage I had less chance of being a match than a random stranger.

[vickij]

I took my 1st revlimid pill today. I'm not sure what to expect. I know I will have blood tests done weekly for a while. I guess if my counts go up then it is doing its job.
What I'm not sure about yet, is if this works, do I still need marrow transplant right away or do we wait.
My sister & I will be tested on Friday to see if she is a match.

[riccd2001]

When I was taking Revlimid (10mg) after dinner I found that it really made me feel extra tired. So I adjusted the timing - later in the evening, it was like taking a sleeping pill.

Doc stopped the treatment after four months because my WBC was getting much too low.

[vickij]

I'm not sure what the revlimid is supposed to do or how long it takes to work. I have been on it for 12 days now. I had to have another transfusion 2 days ago ( 3 pints ) my hemoglobin was 5.8.
It is hard not to get scared . I will see my hematologist tomorrow for blood work and I will find out more about revlimid.
My sister & I went to IU Med Center last Friday to see Dr Nelson. I should find out this week if he wants to do the transplant. We will find out in a few weeks if my sister is a match.