[inky100]

Treatment-related myelodysplastic syndromes (MDS)

by inky100 on Sun Oct 12, 2014 3:26 pm

Hello all,

Well, I had my three month follow-up last Tuesday with my hema­tol­ogist / oncologist in Nashville. They did the labs, a bone marrow biopsy, and a skeletal survey.

(For information on my previous labs, see this forum thread: "Am I relapsing".)

Getting me positioned for the biopsy was difficult because I was in a great deal of pain due to a sudden and unexplained explosion in the back of my neck and head last Sunday morning, which still hasn't gone away. It was very painful for me to lie down, and, embarrassingly enough, I was bawling like a baby when they were trying to lay me down to do the biopsy.

They called my doctor in to see what he wanted to do. He suggested rescheduling, but I am very stubborn. I wanted it done so we could get some answers about what is going on with me. They gave me a pain pill, some medicine in my IV, and, I finally managed to lay down.

Anyway, as for my lab results, except for changes on my SPEP, so far everything looks pretty much like it did three months ago according to the results I currently have access to on the website.

Here's the kicker though. My doctor called me Friday morning to tell me the good news / bad news thing.

Good news: Although there is myeloma in my bone marrow, it's not much.

Bad news: My bone marrow results show abnormalities consistent with myelodysplasia.

My doctor said that based on the results he has so far, it looks like I have not yet developed leukemia, but he is awaiting more test results. He told me that this is serious, and we have a couple of options: palliative care being one, or an allo stem cell transplant. He said they were going to start looking for matches in case I choose that route. I don't know a lot of specifics yet, but I have another appointment on Tuesday for a PET scan, more labs, and a visit with my doctor.

Honestly, the thought of having a donor transplant terrifies me. The very first myeloma patient I ever met after I was diagnosed in the spring of 2005 died in late fall that same year from complications after her allo transplant, without ever leaving the hospital. I was told that she was really sick the whole time. I'm sure things have improved in the past nine years, but, still, I will never forget that. It was my very first real impression of multiple myeloma.

Furthermore, I almost didn't survive my last auto stem cell transplant in 2012 due to the development of an infection on the evening of day -2 after they wiped out my immune system. And, even my doctors and nurses thought I was going to die. Thankfully, I didn't find out about that until way after the fact. I am one stubborn duck. I was too ornery to give in. Even my mom always said that I am the hard-headedest human God ever put breath in.

I know my doctor will have a lot more to say on Tuesday, but, based on the information I currently have, I believe I have a serious decision to make. I know almost nothing about myelodysplasia. As of yet, I've been too afraid to do too much research, but Tuesday will soon be here. I need to get up off my fear, square my shoulders, and weigh my options.

Truthfully, I really don't even know what questions I should be asking. Any input or suggestions any of you could make would be extremely helpful and greatly appreciated.

God bless,
Mary

[Dr. Peter Voorhees]

Re: Treatment-related myelodysplastic syndromes (MDS)

by Dr. Peter Voorhees on Mon Oct 13, 2014 4:00 am

Dear Mary,

I am so sorry to hear about your situation.

Myelodysplastic syndrome (MDS) is a cancer of bone marrow precursor cells that typically leads to a progressive drop in your white blood cells, red blood cell levels and platelets. It also can evolve, or mutate, into a related condition, acute myeloid leukemia (AML). It can occur out of the blue, but can also be the result of prior radiation therapy or chemotherapy used to treat a previous cancer diagnosis. For example, Robin Roberts of Good Morning America was diagnosed with MDS having previously received chemotherapy and radiation for breast cancer.

Symptoms are typically the result of low blood counts (increased infection risk from low neutrophil levels, fatigue from anemia, easy bruising/bleeding from low platelets). Certainly, in myeloma, the most common cause of low blood counts is the myeloma itself or the treatment used to treat it. MDS is not common, although we are likely to see more of it moving forward in light of the fact that patients are living longer from their myeloma than ever before. MDS is often times clinically suspected in a myeloma patient when a drop in one of their blood counts occurs that cannot be explained by progression of the myeloma or as a side effect of on-going myeloma treatment.

In your case, I would ask how the diagnosis of MDS was established. Was it based on how the bone marrow cells looked under the microscope? Typically, with MDS, one sees abnormal red blood cell precursors and may see abnormal white blood cell precursors or unusual appearing platelet precursor cells. If the diagnosis of MDS is made solely on the basis of mild abnormalities of red cell precursors, I would tread cautiously. Mild red cell precursor changes can sometimes be the effect of on-going chemotherapy or the presence of myeloma itself causing disordered red cell maturation.

A common finding, especially in MDS associated with prior radiation therapy or chemotherapy, is characteristic cytogenetic abnormalities (chromosome alterations) in the cancerous bone marrow precursor cells. The cytogenetic abnormalities are distinct from those seen in multiple myeloma. Abnormal blood cell precursors on bone marrow examination in conjunction with MDS-related cytogenetic abnormalities would be highly convincing evidence that MDS is present.

Unfortunately, treatment options are somewhat limited. Allogeneic bone marrow stem cell transplantation is the definitive treatment. Although it is a potentially curative option for the MDS, many patients are not candidates for the approach because of age, other medical illnesses that would make it unsafe, or lack of a suitable donor. With respect to myeloma, often times MDS strikes when the myeloma has become more therapy resistant (this is certainly not always the case, however). As such, inability to adequately control the myeloma itself can represent another barrier to transplant.

For younger patients in otherwise good health with an adequately matched donor and good control of their myeloma, allogeneic stem cell transplant is the best option. However, it certainly carries risk (infection, graft versus host disease), and there is always the real possibility that either the MDS or myeloma can progress in the future despite the transplant.

If transplant is not pursued, one is left with supportive care and a class of chemotherapy drugs referred to as hypomethylating agents (Vidaza [azacitidine] and Dacogen [decitabine]). Sup­portive care can consist of blood and platelet transfusions, growth factor support to boost neutrophil and red blood cell levels for those with excessively low neutrophils or anemia, and prophylactic antibiotics for those with low neutrophil levels. Vidaza and Dacogen are commonly used for those patients who are requiring frequent blood or platelet transfusion support. They are not curative therapies for MDS, and their activity in treatment-related MDS is somewhat modest.

Revlimid is FDA approved for a distinct type of MDS characterized by an isolated cytogenetic abnormality, specifically a missing portion of the long arm of chromosome 5. It also has some activity in other variants of MDS. This seems counterintuitive given the fact that Revlimid administered after melphalan increases the risk of MDS for patients with myeloma. In our experience, the use of Revlimid for treatment of MDS in myeloma patients as a way of going after both diseases does not work well. It might be effective treatment of the myeloma for those that have Revlimid sensitive disease, but its activity against the underlying MDS is modest.

On-going studies are trying to determine if we can identify those patients that are inherently more at risk of developing treatment-related MDS. Additionally, as patients with myeloma live longer, it will be critical to advance therapies that are not only effective but carry with them fewer risks of long-term, potentially devastating complications.

I hope this information will make your Tuesday discussion easier to understand.

On a side but important note, you need to figure out why you are having that neck pain. I would suggest imaging the area if that has not already been done.

Thanks and hang in there!

Pete V.

[inky100]

Re: Treatment-related myelodysplastic syndromes (MDS)

by inky100 on Mon Oct 13, 2014 11:23 am

Dr. Voorhees,

Thank you for your quick and informative response. You have certainly given me quite a bit to think about. I trust my doctor 110%, but, still, it is good to be armed with the knowledge of others who have experience in this field.

There is another test on the website under my lab results listed as: [MolecDiag] JK2 V617F C.1849 G>T. I do not have the results from that test, but I looked it up on the internet. If my findings are correct this test is otherwise known as Janus Kinase 2, and would be the test for cytogenetic abnormalities.

Also, as for my neck, they did a skeletal survey last week and reported only degenerative changes. However, they will be doing a PET scan tomorrow. I was thinking about making an appointment with my local MD too -just in case.

Thank you again for your response.

Have a great day,
Mary