1. < Blood Cancers & Disorders

MDS (myelodysplastic syndrome): When to start treatment?

Posted by tinytwiggy @tinytwiggy, Dec 1, 2024

My husband has lower risk MDS (SF3B1 mutation) MPN RS T . He has had chronic anemia that has been monitored for over a couple years. He also has a strong history of heart disease; had 3 stents placed in his heart on 3/12/24. He will have a femoral endarterectomy /angioplasty on Dec. 13th to help clean out his blocked arteries. (This was postponed from 12/3).
Dave has great hematologists who have recommended he start shots mid-December, to help boost his RBC/Hgb. They feel this will also help with his other medical conditions. Drugs mentioned were Aranesp, or Darbepoetin. There are other options like epoetin, Epogen, Procrit, but these were not mentioned in his plan of treatment. Just trying to sort everything out.
Can anyone share personal experiences on these meds and if they helped you, had any side effects, etc. He is a little fearful of starting. He is worried about side effects reported on some of the meds (especially heart attack and stroke). He also wonders once he starts, will it lead to needing more and more? Will it advance his condition quicker? Should he stay on the wait and watch plan longer?? He has been tired for a couple years now, so he has learned to deal with that the best he can. He wonders though, is this better than other side effects, or complications that could arise?
We know he has to do something at some point. Hgb. was 9 on 10/24 and up to 10.1 at his highest over the last year, or more. The anxiety of the unknown is a big part of the fear he is facing. He was just diagnosed on 4/15 so lots to learn yet. Any shared experiences and thoughts are welcome. Thank you so much!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

tkidd51 | @tkidd51 | Mar 23 2:12pm
In reply to @girlmidget "My husband was diagnosed with MDS in October, 2023. It is high risk; close to AML...." + (show)
@girlmidget

My husband was diagnosed with MDS in October, 2023. It is high risk; close to AML. His has the IDH1 gene mutation. He has extremely low red & white blood cells as well as platelets. He has had many red blood and platelet infusions, as well as bone marrow biopsies. He takes Vidaza chemo shots (usually one week per month) as well as Tibsovo daily. Labs twice a week, so he is a pin cushion. He is 73 years old, was very athletic before the disease, and had retired for 8 months before diagnosis. His metabolic numbers are beautiful, but his differential is horrible. He is afraid of stem cell transplant because of the unsuccessful stories he has heard. I wonder if this is what he can expect of his life without it. Will it be a series of chemo and pills? He is confined to the house and is inactive due to no energy. He has many friends and support from church, but is this what we can expect since there really is no cure other than a miracle from God?

Jump to this post

Good afternoon! I was diagnosed with AML with 5 mutations at the age of 51 in April 2023 and went through a BMT (donor anonymous) in September 2023. I’m doing really good. I promise it’s not an easy journey, but it’s a 2nd chance at life that I definitely don’t take for granted. I’m so so blessed and thankful for my donor, family/friends plus Mayo Clinic for saving my life. Let’s not forget my Heavenly Father had his hands on me the whole way.
One suggestion, DON’T ASK DR. GOOGLE! I did that at first and it took me down a lot of rabbit holes.

REPLY
tinytwiggy | @tinytwiggy | Mar 23 2:25pm
In reply to @alive "My transplant for AML was 8.5 years ago. My transplant was the miracle I was praying..." + (show)
@alive

My transplant for AML was 8.5 years ago. My transplant was the miracle I was praying for. I was only a few days from dying when I was diagnosed. Getting a transplant is a personal decision and there is a risk of complications and dying. However, there is also a chance for a cure.

When I was preparing for my transplant, I read all about the statistics. For me, it was I was either going to live or die. I took the chance and proceeded to get a transplant. I have no regrets!

I recommend that your husband shares his hesitations with his doctor and the social worker on the transplant team. It will be also helpful to talk to the transplant recipients and hear about their experiences.

Wishing your husband and you all the best as you make that difficult decision!

Jump to this post

So thankful you've gained a second lease on life! I'm sure it was a scary and difficult choice. Sounds like it was your last chance and you took it! Hope your life is now full of happiness and that you're making all your dreams come true! Thank you for sharing. 😊

REPLY
girlmidget | @girlmidget | Mar 23 6:50pm
In reply to @alive "My transplant for AML was 8.5 years ago. My transplant was the miracle I was praying..." + (show)
@alive

My transplant for AML was 8.5 years ago. My transplant was the miracle I was praying for. I was only a few days from dying when I was diagnosed. Getting a transplant is a personal decision and there is a risk of complications and dying. However, there is also a chance for a cure.

When I was preparing for my transplant, I read all about the statistics. For me, it was I was either going to live or die. I took the chance and proceeded to get a transplant. I have no regrets!

I recommend that your husband shares his hesitations with his doctor and the social worker on the transplant team. It will be also helpful to talk to the transplant recipients and hear about their experiences.

Wishing your husband and you all the best as you make that difficult decision!

Jump to this post

Thank you. He needs to decide if he wants to continue what treatment he is on, which seems like it may be forever, or take the risk of BMT. It’s hard to see him suffering so.

REPLY
girlmidget | @girlmidget | Mar 24 12:24pm
In reply to @loribmt "Hi @girlmidget. Welcome to Connect! You’ve come to the right place to be able to speak..." + (show)
@loribmt

Hi @girlmidget. Welcome to Connect! You’ve come to the right place to be able to speak first hand with those of us who have had AML or MDS and required a bone marrow/stem cell transplant. Your husband, from my experience, with his age and overall good health except for differential blood numbers, could be a candidate for transplant. Obviously the final decision is with your husband, you and his doctor.

I had my SCT almost 6 years ago for high risk AML at the age of 65. I’m now 71, cancer free and living an amazing 2nd life. I travel, exercise, have excellent energy levels and very minimal issues related to the SCT. My life, I’d say, 98% normal?? But then again, I’m also 71 so I can’t expect to always feel like I’m in my 20s.

I’d like to introduce you and your husband to @katgob, @dwolden @mary612 @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 @tkidd51 and a growing list of successful BMT/SCT for our blood cancers.

To answer your question, at this time, a bone marrow transplant remains the only potential cure for MDS/AML. I’m not sure where your husband is getting his information but there are more success stories than failures. I’d encourage him to stay off Dr Google.
If he elects not to go with the transplant and his disease keeps progressing, from my own experience with advanced AML, there will be more reliance on transfusions and medications. With that comes weakness and fatigue. I believe he’s experiencing some of that already so basically it is more of the same.
With a transplant he’ll have a few early months immediately following the transplant, of fatigue, possibly nausea. But slowly and steadily blood numbers start building and life takes on more normalcy. Many of us, like myself, no longer have transfusions or even take any meds when we’re past a certain recovery point. So I hope that your husband will have a long talk with his doctors, you and your family about possibly going ahead with the transplant. The process is not a walk on the beach by any means and as with any medical procedure there are risks, but it is also an opportunity for a 2nd chance at a healthy life.
Do you live near where the transplant center?

Jump to this post

Yes, our oncologist is with Ochsner Medical Center Hospital outside of New Orleans. I believe the transplant would be there. There is Hope Lodge there for recovery. It is something that we need to consider, as it does seem the process of chemo and medications may be a lifetime. Has there been remission without SCT?

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 24 10:35pm
In reply to @girlmidget "Yes, our oncologist is with Ochsner Medical Center Hospital outside of New Orleans. I believe the..." + (show)
@girlmidget

Yes, our oncologist is with Ochsner Medical Center Hospital outside of New Orleans. I believe the transplant would be there. There is Hope Lodge there for recovery. It is something that we need to consider, as it does seem the process of chemo and medications may be a lifetime. Has there been remission without SCT?

Jump to this post

There is much to consider before a SCT. Besides the medical aspects, there are also the logistics such as lodging and relocating, usually for several months.
In response to your comment about medications for a lifetime…Initially there are several medications necessary such as anti-rejection meds, along with medications which will act as a temporary immune system. For many of us though, once we reach a certain point in our recovery, we’re no longer on any medications. That varies by individuals.

With your husband’s MDS classified as high risk and already receiving many blood and platelet transfusions while in treatment, it’s my understanding that it would be unlikely for him to reach a durable remission without the transplant.

He would most likely continue as he is now with his current treatment plan or similar, along with transfusions.
I think it would be very helpful to meet with a transplant doctor to get all the information and ask questions. It would give you a clearer picture of what to expect and maybe have you both feeling a little more comfortable with the decision…either way.
I’m here anytime as a sounding board, along with my fellow BMT friends who have jumped into this conversation too. We want to help with whatever you decide.
What is your husband’s biggest concern with having the SCT?

REPLY
1 reply
shemac711shemac711 | @shemac711shemac711 | Mar 25 8:08am

Good morning,
My prayers and thoughts are with you all this morning. I wanted to let you know I was thinking of all of you.
I hope as today begins you are finding peace and healing in your day.
Much love to all of you!!!

REPLY
shemac711shemac711 | @shemac711shemac711 | Mar 25 11:14am
In reply to @tinytwiggy "Sherri, We are never alone on this journey, thanks to all on this site who are..." + (show)
@tinytwiggy

Sherri,
We are never alone on this journey, thanks to all on this site who are going through similar situations. That's helped us, especially me. I'm the caregiver to him and my elderly mom, so some days are harder than others. It's been nice though, as we are here to listen, share stories and support one another.
Dave is getting a shot of Arenesp, every three weeks. Other than he says it stings when they give it, he's had no symptoms, or adverse effects. His hgb has come up some. Staying around 10 for two-three months. His hematologist was okay with that, since bwe're only shooting for 11. Any higher than that, there can cause a stroke, or heart attack. We're gonna keep trying this route. He also told him to take an iron tablet every day, to see if this helps. He didn't think it will, but said it could, so it was worth a try.
We will see him again in 6 weeks to talk. There are other meds out there but insurance can deny until certain markers are met.
He doesn't have the energy and stamina he used to. He tires easily but doesn't feel sick, so we take that as a win for now.
We'll definitely keep in contact. Always good to have prayers shared between our loved ones and our families.
God Bless!
Gail

Jump to this post

Hi Gail,
Even though I do not know you personally, I want you to know that I am always thinking of you.
I am very weepy today and trying to pull myself together. I should be happy and am happy because today we are blessed with another good day. I guess I have been reading to many support group postings on Facebook. I just have to keep in mind one day at a time and be strong.
I was thinking of you earlier this morning and just wanted to let you know. I hope you and your are finding peace in your day. How has your husband been feeling and your mom?
My husband had a second BMB this past Monday and his blood Hemoglobin went from a 10.6 to 11.1. So, for that we celebrated. I know everyone's journey is different and I guess that is why I can't find the answer I am looking for regarding medication and when. To be honest we haven't even discussed medications, but I know it is heading in our direction.
Thank you for allowing me to unburden myself.
I am here if you ever need to do the same.
Much love and prayers sent your way.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 27 3:04pm
In reply to @pmlind4 "My husband was diagnosed with MDS 6 months ago. He has had 2 rounds of chemo..." + (show)
@pmlind4

My husband was diagnosed with MDS 6 months ago. He has had 2 rounds of chemo treatment. His oncologist wants his platelet counts at 20 or above. R has blood drawn every M,W,F and every time he has needed platelet transfusions and sometimes red blood transfusions. R is tired most of the time but he has been advised not to take iron supplements. He had a stem cell transplant 5 years ago when he had myeloma. He is 78. Is there any natural way to increase his platelet levels and get his bone marrow working again?

Jump to this post

@pmlind4, I'm bringing in @loribmt on this discussion who has first-hand experience with stem cell transplant. In the meantime, you might find this information helpful in this related discussion:
- What foods or supplements help increase Low platelets? https://connect.mayoclinic.org/discussion/low-platelets-5/

Having had a SCT, some of the tips may not be advisable and I'm glad you have the guidance of your team on any suggestions you read.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 27 8:06pm
In reply to @colleenyoung "@pmlind4, I'm bringing in @loribmt on this discussion who has first-hand experience with stem cell transplant...." + (show)
@colleenyoung

@pmlind4, I'm bringing in @loribmt on this discussion who has first-hand experience with stem cell transplant. In the meantime, you might find this information helpful in this related discussion:
- What foods or supplements help increase Low platelets? https://connect.mayoclinic.org/discussion/low-platelets-5/

Having had a SCT, some of the tips may not be advisable and I'm glad you have the guidance of your team on any suggestions you read.

Jump to this post

Hi, @pmlind4. I’m sorry I missed your post earlier this month. As a refresher, here is what you wrote: “My husband was diagnosed with MDS 6 months ago. He has had 2 rounds of chemo treatment. His oncologist wants his platelet counts at 20 or above. R has blood drawn every M,W,F and every time he has needed platelet transfusions and sometimes red blood transfusions. R is tired most of the time but he has been advised not to take iron supplements. He had a stem cell transplant 5 years ago when he had myeloma. He is 78. Is there any natural way to increase his platelet levels and get his bone marrow working again?”
~~~~
Your husband (and you) have been through quite a bit over the past few years with the autologous transplant (using his own cells) to treat his multiple myeloma and now coping with MDS. Life can sure throw us some curveballs…

I wish there was more encouraging news about natural ways to increase platelet levels or getting a compromised bone marrow to work again. It would be a dream come true for so many of us. There are some foods which may promote an increase in platelets and other blood cells, being basically just part of a healthy diet and not a miracle cure.

When there is a blood cancer involved, there is more at play than diet. In MDS, bone marrow itself is no longer able to produce healthy cells…sometimes red/white cell or platelets. If there are cancer cells (blasts) circulating in the blood, then these can also crowd out whatever remaining healthy cells there are. Chemo is used to help knock down the cancer cells in hopes of allowing blood cells to regenerate on their own. Even then, sometimes the marrow just can’t quite ‘catch its breath’ in producing enough healthy blood cells. Your husband is requiring red blood and platelet transfusions to compensate for this lack of cells. And right now, at least from my own experience with AML, there’s not much else that can be done to increase cells naturally.

There are meds on the market which may help to boost or encourage platelets and red blood cells in certain cases. But these aren’t always options due to the type or progression of a disease.

Your instincts are right about anemia/low energy and thinking iron supplements. However, there can be danger of an iron overload with iron supplements, which could be compounded by the blood transfusions.

Your husband has had 2 rounds of chemo treatments. It can take time between rounds for blood numbers to climb. Has there been improvements in his cancer markers? Was there a reference to blast cells in his blood tests?
Have you talked to your husband’s hematologist oncologist, PA or NP about the fatigue?

REPLY
suetex | @suetex | Mar 28 11:52am

I have MDS and am recently been dealing with low platelets I have been in search of "natural" ways to raise their levels. PubMed has a good article on the effectiveness of papaya leaf extract. They don't know how it works but it seems to. Knowing I have upcoming labs I have been taking them as a short term trial. I will report on the results.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.