Newly diagnosed in Fresno CA

[Twilees mom]

Hello, I am newly diagnosed with MDS w/ excess blast. Got the diagnosis yesterday, meet with Doc tomorrow. My husband and I are shocked by this and are worrying ourselves sick. My fatigue level is high and all I want to do is cry. Can anyone give me some words of support? When will the lump in my stomach go away, will I ever feel less tired? We are so sad!

[Neil Cuadra]

Twilees mom,

Many of us here remember the shock of an MDS diagnosis. We said "M-D-what?" and then started to read about the disease. We soon learned that this is a dangerous disease but that there are treatments available and people who know what to do. I wish I could tell you that there's a magic pill that instantly cures MDS, but unfortunately there isn't. Still, you'll find many MDS patients who have successfully battled the disease and are doing OK. My wife is one of them, diagnosed 15 years ago.

Having MDS is frightening, but there are many people who are willing to help, from the amazing folks at the Aplastic Anemia & MDS International Foundation (AA&MDSIF) to the doctors and researchers who work with this disease every day to your fellow patients at sites like this one and at regional and local conferences. Together we're your instant support team.

You'll want to know more about MDS and your particular diagnosis (MDS/RAEB). Two of the best sources are the free information packet you can get from the AA&MDSIF (order it right now), and the Patient Handbook that you can download from the MDS Foundation. It takes a while to learn the medical jargon, but it helps to know some of the basic terms and phrases (CBCs, blasts, IPSS score, etc.) so you can be a partner to your doctor. You can't learn all the medical jargon instantly, but we all learn as we go.

You can also learn about MDS from the AA&MDSIF Online Learning Center, which offers MDS tutorials and webinars, live or pre-recorded.

Let your family know what's happened and get them onboard too. They should read or watch some of this material so they can provide you with the best emotional support as well as practical assistance. The AA&MDSIF offers a list of medical questions you can ask and you can post any questions that you think of for the other patients in these forums. When you go to medical appointments, try to take along a friend or family member who can take notes and who can make sure that you get your questions answered. It's best to go to appointments with a written list, and to remember that the doctor works for you and shouldn't leave until your questions have been answered in terms you understand.

If you want to talk to another patient or caregiver on the phone, check out the AA&MDSIF Peer Support Network.

There are research studies in progress all the time to that help identify the best options for patients. A doctor with MDS expertise will know how to weigh the tradeoffs among treatment options. Your local GP or even a hematologist at the closest hospital, on the other hand, may have little or no experience with MDS. You really ought to be under the care of a doctor who knows MDS well. Will that be tough to do in Fresno? Would you be able to get across to Stanford University, up to UCSF, or south to the Los Angeles area, at least for a consultation?

[Cheryl C]

Hello Twilee's Mum - I understand a lot of what you are feeling as I was also diagnosed with MDS (10% blasts) around 10 months ago. Support sites such as this one are wonderful so keep logging in and asking questions. There are people who have trodden the road before us and their responses are often invaluable.

Please try not to be stressed because I'm sure that stress contributes to our level of well-being. Just find out as much as you can about the disease and prognosis and make informed decisions. I decided to continue my life as it was (working, etc) until I knew all I needed to know. That took 5 months, while my brothers were tested for compatibility and I had all the tests to ensure I was fit for a transplant, then at the last biopsy before going ahead with a BM transplant, my blast cells had inexplicably dropped to 2% and my diagnosis changed from RAEB to RCMD.

The best thing I have done now is to stop work and go on an extended holiday with my husband. We're travelling around Australia. Although my blood counts are all abnormal I'm not having any treatment except for 4-weekly infusions of IntraGam for hypogammaglobulinaemia. So far I'm going OK. Yes, I feel unwell at times, but I find that regular walking actually helps me feel better afterwards.

I guess what I'm saying is, try not to panic and make really fast decisions! Every time you think of a question you want to ask write it down and go through the list when you see your doctor.

May God bless and guide you as you seek the best options for you!

[Al's Wife]

Twilees Mom,

My heart goes out to you also. I can remember that feeling of "will this sick feeling in my stomach ever go away." And let me assure you, that it does, even though occasionally it will creep back in. Here is a saying that my sister had posted on Facebook and I copied recently, which helps:
"There isn't enough room in your mind
for both worry and faith. You must
decide which one will live there."
My husband was diagnosed two years ago. I am on the Internet constantly. One warning to you is - be sure you look at current information. A lot of the info is outdated and will just confuse you. Not that this disease isn't confusing under the best of circumstances.
I would also advise getting a second or third opinion if you aren't comfortable with the doctor, or even if you are, it never hurts to get another perspective.
I hope you are young enough for a transplant. My husband isn't so that is not an option for him.
There are so many great people on this board and it can be a great source of information as well as support.
Just know you are not in this alone and don't hesitate to ask questions. Good luck and God bless,

[riccd2001]

I agree that that initial shock is hard to deal with. As has been said above, knowledge is power and this is a GREAT source for both patients and caregivers. It took me well over six months to gain the info I needed to partly understand MDS and be resolved to live the best I can.

It's been over four years since my diagnosis and I'm still learning more.

[donna j.]

Ric,
I am curious if you are PCRB dependent and have had the disease for 4 years, how often do you need a transfusion, how much and what are your counts?
Donna

[riccd2001]

Where I live there is no support for SCTs or other type of marrow transplants, so the choice was limited to transfusions on a sliding scale for Hgb together with oral iron chelation. Over the last 4 years I've had nearly 195 PRBC units transfused and on-off Exjade to keep serum ferritin under 1000ug/L .

I have lab tests every three weeks and allow an extra day for blood bank to locate compatible units. Usually I get two infused over a four hour period with the usual pre-meds of Tylonel, Benadryl, and IV hyrdocortisone. Every so often I'll get three units when I'm borderline 70 Hgb. So far it works for me and I'm thankful for the kind folks who donate blood. Btw I do keep track of the volume of each unit as well as date of expiration because there is quite a range.

[cathybee1]

Hi Twilees Mom. Hope your appt with doc went well. We've all been down this path, either as patient or family member. You will be on sensory overload for quite a while. The best advice I can give you is to write down your questions before seeing the doctors. And have your husband or someone go with you to write down the answers.

[cathybee1]

And at some point you should also consider a consultation with a MDS Specialist. You are fortunate to live in a part of the country where access to MDS Specialists is relatively easy. There are good ones in Los Angeles (City of Hope and UCLA) and Stanford.