Living with MDS (Myelodyplastic Syndromes)

@robertp129

I'd recommend seeing an integrative oncologist as well as working with your current physicians to help identify what might be beneficial in your specific case. In my case, I'm taking vitamin D3+K2, ImmunoKinoko 750, Maitake SAP, and a green tea extract. These have all been shown to have some marginal benefit for MDS. My integrative oncologist gave me all of the research papers she was able to find in this regard which I very much appreciated.

When I started Inqovi, my blasts were around 7%. After 3 cycles of Inqovi over about 5 months, my blasts were reduced to 4%. Six months post-Inqovi my blasts were at 1%. Inqovi does exhibit residual effect on blasts even after you stop taking it so I'm sure much of the work of cleaning up my blasts was due to Inqovi. Regardless, I still take the supplements as, like I mentioned, I'll take whatever edge I can get. They certainly don't hurt and, if anything, may contribute in some small way to helping to clean things up.

Any specific questions, please don't hesitate to ask!
-Greg

@robertp129 I found that Promacta provides better results and the side affects went away after a week.

@docheat72 I was asked to stop all supplements during the 5 days of taking the meds. i have been taking some mushroom and green tea extracts and will start that again next week. I am not familiar with an integrative oncologist. Where are you finding that resource? I know some of the larger clinics have an integrative med department. HD Anderson for example. So far just two days on med and no problem. robert

@robertp129, here's some info on integrative oncology. More and more cancer centers and oncology specialists are open to discussing and integrating complementary medicine in programs called Integrative Medicine or Integrative Oncology. Integrative medicince is offered at many cancer centers of excellence, including Mayo Clinic.

Here's a link to more information about Mayo Clinic's Integrative Medicine programs
– Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

In this Mayo Clinic Q & A Podcast. Dr. D'Andre talks about how integrative oncology can be incorporated into conventional cancer care at Mayo Clinic.

Hello everyone,
My mom have just been diagnosed with high risk MDS. I am so worried about her. They started with her Decitabine . She just took her second cycle. I just want to know when we are going to see improvement?? Her platelets always under 50. She is taking Ivo gene therapy along with Dec for her IDH1 mutation.

Welcome, @sharifaa. I moved your post to this existing discussion:
- Living with MDS (Myelodyplastic syndromes) https://connect.mayoclinic.org/discussion/living-with-mds/

I did this so you can connect with others like @momz @nbadry @snakebite @katgob and many other members who have experience with MDS.

There are many discussions related to
- MDS https://connect.mayoclinic.org/group/blood-cancers-disorders/

@sharifaa, I can imagine you are worried about your mom. She is lucky to have you looking into information and other experiences for her. I see she is on treatment now. What is the treatment plan recommended for your mom, considering the IDH1 mutation?

@sharifaa

My husband was diagnosed MDS/AML 4 years ago; had just retired age 71. His treatment for his IDH1 mutation is Ivosidenib (Tibsovo) and Azacitidine shots every 5 weeks. He has done remarkably well, but reds, whites, platelets always low. He used to have labs twice a week, but now only once; bone marrow biopsy every 3 months. Originally lost 50 pounds, but regained 30. His oncologist is very encouraged.

He gets tired easily, and can’t exercise or do household chores like he used to, but he is alive and adjusting to this new lifestyle. He doesn’t like it, naturally, but it beats the alternative.

Encourage your mom and be her best friend. She is not alone with this horrible disease. There has been incredible improvements in its treatment and more to look forward to. My prayers for her health to come.

@honeymae

Are you still with MDS. Sounds like my husband who was diagnosed MDS at first, but then progressed to AML.

I have been receiving treatment for MDS for almost 10 years. My primary doctor got concerned because my hemoglobin had been running low for quite a while, so she referred me to a Hematologist/Oncologist. When I met with him after reviewing my blood tests, he told me he had a pretty good idea what my problem is, but wanted to do a Bone Marrow biopsy to be sure. I was frightened, but he said that would be the best way to determine my treatment, After the biopsy, he confirmed that my problem is MDS as suspected. He explained that my bone marrow does not produce enough healthy red blood cells. He started me on 600mg of B6 which is supposed to help the red blood cells. Wasn't working well enough. He then prescribed a medication (injection) which he said should work better. It did. However I was still extremely tired and had zero energy. After a couple years on the medicine (can't remember the name) he told me that a doctor he went to med school with was on the panel testing a new medication which he said appears to be perfect for me. At the time it wasn't available yet, but he said as soon as it was, we would start it. It wasn't long after, that he got the OK from my insurance and I began receiving REBLOZYL (luspatercept). My hemoglobin immediately rose to acceptable levels. I still needed regular injections, but the results were much better. Now I have my blood tested every three weeks and depending on the results, I get my injection. For the last couple years, I've been getting injections almost every 3 weeks. I am still without much energy and there's a lot of things I can no longer do, but I am here and doing OK. I have several other medical issues which makes it hard for me, namely osteoarthritis, scoliosis, disc issues, sciatica to name a few. But again I am 83 and I have a beautiful daughter that tries to squeeze in time to clean my house every couple of weeks, my husband (91) also helps when he can. There is one thing that I am concerned with. I have been having pain in my leg and when I rub it it feels numb. My orthopedic doctor did an MRI and said he cannot figure out what it is. The MRI showed two white spots, one between the tibia and fibula and one on the outside of the bones. He said it might be related to my MDS and would send a copy to my doctor. When I next saw him, I asked him if hew got the MRI and if he knew what it was. He said don't worry, it just from the medication. We repeated the MRI 6 months later and there were no changes, but I am still worried. I do believe very much in prayer and every night I pray to St, Peregrine that I do not have cancer. There has been so much Cancer in my family that it really wouldn't surprise me. I am sorry that I have been rattling on, however I really don't have anyone that understands except my doctors. Most of my family and friends never heard of MDS. Thanks for listening.

Hi @grandmatoni Welcome to Connect. So glad you’ve chosen us to be your new friends and family. ☺️ We may be strangers but sharing a common bond with a medical condition can make for a tightly knit group.

You have a wonderfully positive attitude for dealing with all the changes that have occurred over the years. I think as we age, we realize there are always compromises. Hah, as if we have any other option but to go with the flow, right? But aging still comes as a shock! I was just at a graduation party yesterday. Oh my gosh, since when did I get to be oldest person at these parties! 😳 Now I’m the crazy old lady next door. Giggle

Back to business: Full disclosure, I do not have MDS but did have AML (acute myeloid leukemia) which is a related blood cancer. However, there are quite a few members who also have MDS with plenty of conversations regarding symptoms and treatments. Keeping in mind there are several types of MDS. Some have different risk profiles for progression. You appear to be in a lower risk group which is good news.
To get you introduced to more members, here is a link to all the discussions involving MDS references.
https://connect.mayoclinic.org/search/
The fatigue caused by MDS can be really frustrating when you feel like being active but lack the energy. It looks as though you have a great response to the REBLOZYL which is used to help treat the anemia related to MDS.

I know you’re worried about the white areas on your MRI for your leg. MRIs can pick up areas of inflammation. Sometimes, brighter spots can just be normal anatomical variations or cartilage irregularities. But you know your body better than anyone else and it’s ok to be the squeaky wheel to keep on having updates. So while it most likely isn’t anything of significance, you can certainly keep your doctor reminded of your concerns!
When you say the leg is numb, is it just in the same area shown on the MRI? Was this your oncologist reviewing the MRI?