[Amy Clark]

Hi Jeb! Not sure what is going on there. Maybe the office is using a machine that is not very accurate and only made to check for a general snapshot of someones hgb? I know there are small machines like that for clinic use, one is called a HemoCue. Other than that our only experience with a recorded swing in hgb. levels is the one time my husband had two draws for blood 30 minutes apart and the hgb.came back as 11.1 and 11.5. Not nearly as big a difference as yours, but enough to make us realize that, like blast counts, it’s a close number, but not 100% accurate. Our oncologist at MD Anderson once told us that a blast count of 6 could really be 4 or 8, but not 12. I know lots of medical decisions are made based on the “exact” number of something on a lab result, but it is in all likelihood a little off one way or the other. That’s my two cents. Hope it helps. Otherwise, maybe ask your clinic. God bless you!

[Amy Clark]

Hi Rose, I wish I could give you a hug and a cure for your husband. I am so sorry that you are going through this. I don’t know of anything medical, but I do know that the love and support you give your husband at this time is among the most important things you can do. May God be with you and your husband and bring you both peace. My husband and I are holding you both close to our hearts in prayer.

[Amy Clark]

Carrie, we share your pain. My husband was dx with MDS when he was 52 and still training for Ironman competitions. He was very healthy. It can just happen, or maybe you have an unknown familial disposition, like a “probable gremline (passed down genetically) mutation” as what seems to be the case for my husband. The only cancer on either side of his family is one uncle who died young of AML and another on the other side who died in his 80’s last year of myelofibrosis. Drs. don’t treat MDS when it is in a Low Risk stage because the treatment can be worse than the disease and are often not effective in the end. But they are actively researching and may have something out there I am not aware of. Since there is no cure but a stem cell transplant, again, which can be worse than the disease unless you are one of the lucky ones who has success and no long term side effects from that, Low Risk disease if often “treated” wit active observation or watch and wait. Spend a little time in shock and sadness, you are human and this is tough. Then gather the info you can to make good next decisions. Definitely go to a CoE for a second opinion. This MDS Foundation can help secure an appointment there. The CoE will likely want another bone marrow biopsy (ask for scheduled sedation), but the CoE sees many more people with MDS and may have clinical trials if you are interested in that. And ask questions on the forum. You are not alone, but MDS does stink. Call me if we can help share info or stories, or just listen. Amy (53) and Richard (58) Clark 832-540-4214. PS: You will want to know your actual blast number, genetic mutations, karotype (yours is normal), and the lineages that are dysplastic, as well as you hgb (hemoglobin), anc, and platelets, when at the doctor’s office.

[Amy Clark]

My husband was on it for three cycles and the fatigue was so debilitating that he stopped taking it. He was sleeping @ 16-18 hours a day, and also experienced more shortness of breath and stomach issues. The doctor at the COE said the debilitating fatigue didn’t happen very often, maybe 3% of people who took it, but then listed several patients who had the same outcome of debilitating fatigue. The doctor called it a “bad reaction.” I personally think the extreme fatigue is one of those side effects that went underreported during the clinical trial for whatever the reason, but that is just my opinion. Fatigue IS listed as a common side effect (@30%) during the trial, but this extreme or debilitating fatigue is not mentioned. We were very disappointed, of course, but are hopeful that it can help some other patients without, like you said, Kenan, the cure being worse than the disease.

• This reply was modified 4 months ago by Amy Clark.

[Amy Clark]

I just re-read your post and saw that I didn’t answer your original question particular to your husband starting Aranesp. While I would assume that the doctor wouldn’t start your husband on a new med at this time without thinking there had been a change in his disease, especially given the gradual change in his blood levels, you will have to ask the doctor personally. It certainly seems that way to me (and you, I think), but I am not his doctor. Good luck!!

[Amy Clark]

Melissa,
I am sorry you and your husband are dealing with this disease and all the uncertainty it brings. The uncertainty is a particular cross for this disease. From all I can tell over the past several years of being on this forum and researching independently, moving from watch and wait to something more active is very individualized and, of course, related to the genetic mutations each person has and how they (the genetic mutations) interact with and against each other. Some mutations when put together act as a booster for the disease, some as a brake, slowing the roll. The doctor will usually order a bone marrow biopsy/aspiration when the patient’s disease looks to be changing to help decide the next course of action by looking for additional changes in the blood, chromosomes and mutations which may open up certain clinical trails, meds or treatment for the patient. Hope that helps. God bless you!

[Amy Clark]

So sorry you are going through this. The same happens to most people when they go to a new place. Yes, it absolutely stinks to have a new bone marrow biopsy done when you just had one. However, the new Major Cancer Center likes to have their own people with specific training draw and read your bone marrow in case the other place had different techniques that ended up with less reliable readings. The new place likely has more pathologists, etc., familiar with the type of cancer they are looking to rule out. Have you had a firm diagnosis yet or are they just suspecting MDS or another blood cancer? Know that you can ask for sedation the next time they need a bone marrow biopsy or extra numbing medicine if you are awake. My husband also asked them to go slow on the injections for numbing and to wait for it to take effect, like 5 extra minutes. Both the extra lidocaine and the waiting helped a ton until his marrow became too tired and now he will only do a bone marrow aspiration or biopsy under sedation. Just fyi. Call if you need to talk 832-540-4214. My husband was young at dx.at 52. He is now 58. God bless you!

[Amy Clark]

Rose, thank you for posting. I am so sorry he has relapsed. We are praying for you both during this time. God bless you, Amy

[Amy Clark]

Hi! I am sorry to hear of his dx. My husband’s mutation results took two-ish weeks, but it may be longer for you b/c of the holidays. The hospital/lab will post them to your chart. We saw my husband’s mutations before the doctor called us about them.

If you are not at a center of excellence (COE) for MDS, I would make getting to one a top priority. This organization, The MDS Foundation can assist you in getting in quickly.

In our case the second bone marrow reading at the COR was redone and his blast count went down by 4 points. Reading the bone marrow and counting the blasts is an “art” as well as a science. As our new oncologist at the COE later told us, a blast reading of 8 can be 6 or 10, but not 2.

Hope that helps! Prayers to you!

[Amy Clark]

Thank you Heinz and Debbie,
I appreciate you both taking the time to share your experiences. I had read a while back about a couple of people on this forum who were taken off their HMA after having a large reduction in blasts and wondered how they were doing. In each case it had been a year or two since they stopped HMA treatment and they were fine. I also wanted to hear from others like yourselves.
Heinz, I am so sorry yours turned into AML, but am happy you had a treatment for 50 days that worked. I would love to hear about it in case we someday need it as my husband has a normal karyotype. My email is acclark0603@hotmail.com. Debbie, that macrodosing is also a new concept to us. If you don’t mind me asking, could you call or email me specifics. 832-540-4214 Do you still have myelosuppression with that level of dosing? God bless you both, Amy
If anyone else has had experiences after choosing to stop HMA treatment that they are willing to share, please do. Thank you in advance.

[Amy Clark]

Hi Mark, I am so sad to hear they found AML; that is certainly news no one wants to get. You have been through a lot. Hang on while they and you come up with a plan. I am glad you are at a COE. They often have ideas for hard cases that patients are unaware of. We are praying for you and are here for you. Call for any reason. Amy Clark 832-540-4214

[Amy Clark]

Hi Peter,
Best of luck to you on your MDS journey and with this drug. From my husband’s experience and my understanding, the side effects of HMAs that would affect driving have to do with overall blood counts dropping and the subsequent weakness/ poor feelings, as well as the pain inherent in the disease or as a result of bone marrow stimulation from the drug. It is hard to tease the two strands of the rope apart. Is it the disease or is it the drug? You can ask your doctor, but they are giving you an opinion on this one b/c both the drug and the disease affect people differently. Specifically the first few months while on HMAs, your body is adjusting to the cycle and you may end up in the hospital with a neutropenic fever. We later found out that our doctor at the time pretty much “expected” that to be the case. Hope this helps! My husband has been on Inqovi for over three years and would be happy to talk if you are ever interested. 832-540-4214

[Amy Clark]

Ha! on me. I never go to the main page of the MDS Foundation b/c I have a link directly to the forum. But there the info is on the home page, as “big as Stuttgart,” as my husband says. Sorry to repeat what most of you likely already know. Mea culpa!

[Amy Clark]

Just found the new IPSS-M Risk Calculator and article about it. I just tried to copy/paste the links and it wouldn’t post. So the title of the article is
Molecular International Prognostic Scoring Systemfor Myelodysplastic Syndromes
in “NEJM Evidence” publication from 6/12/22. The link to the IPSS-M calculator is at the end of the article, before the references. Hope that helps.

[Amy Clark]

Hi Siobhan,
We saw a new doctor this week at the same institution we have been at for the past 3 1/2 years and he told us that my husband’s mutations were controversial as to what they meant now. So apparently there is some debate going on up there. Sure is confusing. I think your suspicion about that particular mutation not being impactful for the overall prognosis is likely correct.

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