Newbie/Mom diagnosed with MDS

[Marilu]

Hello:

I am glad that I have found this forum. It has provided me with lots of information in a short period of time. I am hoping that some one on this forum could provide me with some help/tips/opinions. My precious mom (74 years old) was diagnosed with MDS a week ago. It has taken 6 months to finally confirm by bone marrow biopsy, and in that time her health declined, she lost 35 pounds and has NO energy, (she sleeps almost all day). She has gone from an active woman to basically bed ridden. I feel that she has given up. All the doctor told us, was that her MDS is of the mild form, she is Anemic, hemoglobin 10.3, iron 800 and that she would not require any medication just yet. Basically it is a wait and see, for the next 3 months. After the doctor's visit, I have been on the internet researching and I wonder if they could not give her some sort of medication such as Revlimid. Basically I am frustrated and sad to see my mom suffering, (she does need her knee fixed due to arthritis, so I don't mind her lying in bed too much), but I just wish I could do something for her.
If anyone could provide any positive feedbacks/tips/opinion, I would be truly grateful.

Thank You,
Marilu

[Ruth Cuadra]

Hi, Marilu.

Welcome to Marrowforums. Sorry you have to be here learning about how to cope with your mother's MDS diagnosis, but I hope we can help.

With a 35-pound weight loss and sleeping most of the day, it seems to me her doctors would want to do more than wait another 3 months to see what happens. Although hemoglobin of 10.3 is not desperately low, each person is different and their tolerance for low blood levels varies. Has she been transfused at all? Can you ask the doctors what they will do in 3 months if nothing changes? If they have a plan, ask why they have to wait and cannot start to treat your mother now.

Revlimid is one possibility for treating MDS, particularly for patients who have the -5q chromosome abnormality. Do you know any of the details of your mother's bone marrow biopsy results to know if she has this as part of her MDS diagnosis? Other drug treatments include Vidaza and Dacogen.

It's important to have your mother treated by a hematologist who has experience with MDS. If you live near a major cancer treatment center or a university teaching hospital (see the list of Treatment Centers on our Medical Resources page), it would be worth contacting them for a second, confirming opinion about the plan her current doctors are suggesting. It may be possible to get another opinion with her existing test results if she is too weak to travel to another center.

Hope this helps. Let us know what questions you have.

Regards,
Ruth Cuadra

[Tom M]

Marilu - Ruth's advice is right on the mark. A second opinion is very important in confirming this diagnosis, and your mother should be under the care of a hematologist experienced with this disease.

It is important to learn as much as you can about this disease and the treatment options available. You can act as your mother's advocate in this, but if you are not sure what is going on, it is hard to ask the right questions and see the right people. There are so many people on this site with so much information that it is a blessing to many of us, like myself, to be able to come here and ask questions and get answers from those going through the same thing. You are not alone.

Stay positive and tell your mom to hang in there.

Tom

[Marilu]

Thank you Ruth and Tom for taking the time to reply, it made me feel that I am not alone.

Both of you suggested a second opinion, I agree, but I am from Toronto Canada and the medical system is slow. It has taken 6 months to confirm her illness and this had to do with waiting a month for CT scans then another month for another CT scans and another month to see the dr for results, and another month and a half for a bone marrow biopsy... and the time just drags on. If I were in the US I would get the second opinion. All I can do is come completely knowledgable on MDS to the next doctor's appointment, and ask intelligent questions !!!!!! (Thank you Ruth for the links to the drugs)

Again thank you for taking the time to reply, it shows that there are kind/helpful people in this world.

Marilu

[Lillian]

Marilu:

I wonder why the doctor hasn't given your mother a Iron infusion.
While her blood count isnt really very low. I know it helped my husband gain energy.. He was so very tired wanting to sleep alot.
Getting your mother checked by a different doctor is very important.
Keep your chin up. I know it isn't easy for you seeing your mom being ill.

Will watch for your postings on progress made.

Lillian

[Marilu]

Thank You Lillian for the email, and I am glad that your husband is doing better. I think my question is DUMB, but why an iron infusion, if the iron is overloaded. My mom's iron is at 800, way to high (and she is anemic), is there not any medication /means to get the high level of iron out. I found a few articles, but I am not sure it will apply to her.

Thank you Lillian, and hope to hear from you, or anymore who could help me.

Marilu

[Birgitta-A]

Hi Marilu,
As Ruth already wrote 10.3 is not a very low HGB value but of cause it can cause tiredness. Perhaps your mother has a depression that could be treated ?

I suppose that when you report that iron is 800 you mean that her ferritin is 800. As far as I understand the doctors often wait till the ferritin value is about 1000 (after transfusions) before they start treatment. The drugs (Desferal, Exjade and Ferriprox) can have adverse effects and most patients tolerate a ferritin level of 1000 without damage of the heart etcetera.

The drugs Revlimid, Vidaza and Zolinza have good effect in many patients but other patients only have serious adverse effects like nausea, low white cell count and low platelets with risk for bleeding. I think your doctor is right when he/she wants to wait and see.

Blood. 2008 Jan 1;111(1):86-93
Phase 2 study of Revlimid in transfusion-dependent, low-risk, and intermediate-1 risk myelodysplastic syndromes with karyotypes other than deletion 5q.
Raza A et al
…214 patients received 10 mg oral Revlimid daily or 10 mg on days 1 to 21 of a 28-day cycle. The most common grade 3/4 adverse events were neutropenia, low white blood cells that fight infections, (30%) and thrombocytopenia, low platelets, (25%) 56 (26%) patients achieved transfusion independence after a median of 4.8 weeks of treatment with a median duration of transfusion independence of 41.0 weeks. In patients who achieved transfusion independence, the median rise in hemoglobin was 32 g/L from baseline. A 50% or greater reduction in transfusion requirement occurred in 37 additional patients, yielding a 43% overall rate of hematologic improvement…
Adverse effects:
Revlimid is associated with significant neutropenia (low white blood cells important to fight infections) and thrombocytopenia (low platelets). Grade 3 or 4 hematologic toxicity was seen in 80 % of the patients. Other adverse reactions reported in del 5q MDS patients: diarrhea (49%), pruritus (42%), rash (36%), fatigue (31%), constipation (24%), nausea (24%), nasopharyngitis (23%), arthralgia (22%), pyrexia (21%), back pain (21%), peripheral edema (20%), cough (20%), dizziness (20%), headache (20%), muscle cramp (18%), dyspnea (17%), and pharyngitis (16%).

American Society of Hematology in Atlanta, 2008, Dec. 11
A Phase 2 clinical trial evaluating three alternative five-day dosing schedules for Vidaza that demonstrated safety and response profiles which are consistent with those achieved with the FDA-approved seven-day regimen
…In this Phase 2 prospective, multi-center, randomized, open-label 3-arm trial, a total of 151 MDS patients were randomized to one of three regimens administered subcutaneous every four weeks for six cycles…The majority of patients (57 percent) were classified with low-risk disease, while 33 percent had higher-risk MDS…
…Between 44 and 55 percent of evaluable patients experienced haematological improvement, defined as major or minor in at least one cell line (erythroid, platelet, or neutrophil)…
… Most treatment-related grade 3 and 4 adverse events were hematological…
Adverse effects
The most commonly occurring adverse reactions were nausea (70.5%), anemia (69.5%), thrombocytopenia (65.5%), vomiting (54.1%), pyrexia (51.8%), leukopenia (48.2%), diarrhea (36.4%), fatigue (35.9%), injection site erythema (35.0%), constipation (33.6%), neutropenia (32.3%) and ecchymosis (30.5%).

Kind regards
Birgitta-A
68 yo, dx MDS Interm-1 May 2006 (HGB 7.0), transfusion dependent, Desferal 4 days every 6th week with transfusion, Neupogen 2 injections/week for low white blood cells, asymptomatic