[Ashley Moncrief]

Hi Donna,

I’ve had other people reach out about a possible link between MDS and lung diseases. I’ve copied the link to two articles I found so you can take a look.

https://pubmed.ncbi.nlm.nih.gov/21742229/

This article was published in the National Library of Medicine. The conclusion of the article is that more research is needed, but it does give a list of lung conditions which have been seen in those with MDS.

“The non-infectious pulmonary complications of myelodysplastic syndromes and chronic myeloproliferative disorders can be classified into several clinical entities: tumour syndrome, pulmonary fibrosis or diffuse infiltrating pneumonia, autoimmune reactions including vasculitis, Sweet syndrome, organizing pneumonia, pulmonary alveolar proteinosis, pleural effusion and pulmonary arterial hypertension.”

https://ascopubs.org/doi/10.1200/JCO.2016.34.15_suppl.e18551

This article was published in the Journal of Clinical Oncology. The information was pulled from Mayo Clinic, which is one of our Centers of Excellence. They studied 827 patients and found that 2% had interstitual lung disease. It was also interesting to see that 43% of the cases involved patients with what is known as a “deletion 5q.” This is the type of information that is gained from the genetic testing.

I do believe that more research is needed as most of what is out there are case studies of individual patients, but I do think hematologists agree that there may be a link between certain lung diseases and MDS.

All that to say, your father is not alone in experiencing both at the same time.

Hope this provides a bit of comfort. Our thoughts are with you!

Ashley

[Ashley Moncrief]

Hi Michael,

My name is Ashley and I am the Director of Patient Care here at the foundation. I would be happy to help you find a location for a second opinion appointment. Most providers will want to do a first meeting in person, but it doesn’t hurt to ask. Feel free to email me at amoncrief@mds-foundation.org or give me a call at 1-800-637-0839 ext. 210.

Thanks!
Ashley

[Ashley Moncrief]

Hi Holly,

Thanks for writing in! I think the connection depends on exactly what is causing the pain. During the study, 30% of patients experienced musculoskeletal pain; however, it was only considered severe in 3% of patients. Upper back/shoulder pain can be caused from other things though ranging from heart conditions to gallbladder disease. Checking with your doctor is best to rule out other conditions. If it’s muscle/skeletal pain, there is chance of a connection.

Hope this helps!

Ashley

[Ashley Moncrief]

Hi Jackie,

Thanks for writing in! As far as the progression to leukemia, the current thought is that about 30% of those with MDS will transition to acute myeloid leukemia. Since he is in hospice care and is no longer having tests like bone marrow biopsies, you likely will not be able to tell if he has progressed. The risk of progression and life expectancy really depends on several things such as the sub-type of MDS your husband has, his risk score, and current lab values as well as the lab values when he stopped treatment.

What I can tell you is that no matter the number the physician gives you, it is an educated estimate. No one can guarantee any set amount of time. I think that is one of the hardest parts with hospice care. You know what the ending will look like, but no one can tell you exactly how long it will take to get there. What I would recommend is to talk to the hospice team for some input as they see him on a routine basis and may have better insight.

I’m so sorry you are going through this right now. Our thoughts are with you and your family.

Ashley

[Ashley Moncrief]

Just following up. We are still in need of three patient participants. Thanks!

[Ashley Moncrief]

Forgot to mention that we are looking for 8 MDS caregivers too!

[Ashley Moncrief]

Thanks Kathleen! I’ve added you to our list and will reach out as soon as the project is officially open.

[Ashley Moncrief]

Hi Alissa,

My name is Ashley and I am the Director of Patient Care here at the MDS Foundation. I would be happy to help get you connected with a hematology group at one of our Centers of Excellence. Feel free to give me a call at 1-800-637-0839 ext. 210 if you would like to talk about some options.

Ashley

[Ashley Moncrief]

Hi Joe,

Thanks for reaching out! You are so right; it’s a pretty common experience. It’s a mixture of a lot of things like the release of hormones after eating and changes in your blood sugar. When you are already worn down by anemia, it makes it much harder. It can help to eat more frequent, but smaller meals but I know that can certainly be hard to do.

Hope this helps!

Ashley

[Ashley Moncrief]

Hello,

Thanks for writing in. There is a lot of activity in MDS related clinical trials right now. There are over 300 open and we are hoping for new drug approvals in the near future. Is your mom interested in clinical trials? If so, we have a team that can help match her with trials ongoing globally.

I don’t know of anything else approved to just treat the anemia. There are medications which target the MDS as a whole. In treating the MDS, it would be the hope that it would improve the anemia with time. You can ask her doctor about hypomethylating agents to see if they feel that it could be an option.

I hope this helps!

Ashley

[Ashley Moncrief]

Hi Peggy,

I hope this finds you well. I just wanted to reach back out to let you know that the advisory board I wrote about filled up quickly. I would like to keep you on our list for future opportunities if that’s ok.

Ashley

[Ashley Moncrief]

Hello,

Just wanted to pop in to share our Visit Discussion Guide. I put the link below. Also, if you need help getting set up at a Center of Excellence, feel free to reach out to me a amoncrief@mds-foundation.org or give me a call at 1-800-637-0839 ext. 210. Happy to help!

Home Demo

[Ashley Moncrief]

Hi Joe,

That’s a great question. I can’t give medical advice, but I might be able to provide a little insight. I have seen it used for short term treatment of side effects such as nausea, rash, and arthritic type pain. When you receive a steroid injection, it is considered “localized” because the effects of the medication are limited to the area where it was given. If you take steroids by mouth, the effects are more widespread. There are some pretty significant side effects of using pills long term such as increased risk for infection, diabetes, loss of bone density, trouble sleeping, and muscle wasting. Overtime, the risks can outweigh the benefits. At high doses, it can actually impact your white blood cell count.

The decision on when to prescribe steroids is definitely based on the needs of each individual patient. If you think you could benefit from it, definitely ask your doctor to get his or her input.

Hope this helps!

Ashley

[Ashley Moncrief]

Hello,

Thanks for writing in! My name is Ashley and I serve as the Director of Patient Care for the foundation. This is a really hard place to be in. Ideally, it should work as a partnership.

You should always feel comfortable with your treatment plan. In fact, you need to be a partner in it. As hard as it will be, I think it is worth asking each physician why they recommend what they do so you can understand where they are coming from. You always have the option of changing doctors if you feel the relationship between your Center of Excellence and local doctor is beyond repair.

Again, I’m so sorry to hear you’ve been put in the middle. If you would like to send me an email at amoncrief@mds-foundation.org or give me a call at 1-800-637-0839 ext. 210, I can certainly try to help you navigate this.

Ashley

[Ashley Moncrief]

Hi Susan,

Thanks for reaching out! You are right; the medication is newly approved. Many pharmaceutical companies offer financial assistance. Servier makes Tibsovo. I’ve copied their financial assistance site below. You may be able to get some help there.

https://www.servierone.com/s/patient/tibsovo

I hope this helps!

Ashley

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