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Can MDS be hereditary?
Approximately 30 years ago, my husband's sister was suddenly diagnosed with a "blood disease" and lived less than 2 weeks after being diagnosed. She had returned from an Indian Reservation outside of Phoenix, Arizona, and upon her return was hospitalized with "acute" flu symptoms. While sitting next to her in the hospital, she was re-diagnosed with cancer and went code blue in the elevator on the way to the cancer ward. She was kept in a coma state and died within a few days. We were able to talk with one doctor shortly before she died who referred to her problem as a blood disease.
Question: My husband was recently diagnosed with MDS and we are wondering if that can be related through hereditary issues.
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Maybe gene? Maybe exposure to toxins?
Research tp53
@shmerdloff
I wasn't able to open your comment completely, but I caught a part mentioning chemo - I went through 6 mos. of chemo 30 years ago and now that mutated into Bone Cancer and I have been on Ibrance for approximatly 10 years. Could these drugs in my body have affected my husband?
@patriciakennedy
I think I was referring to outside toxic chemicals. I don't believe your treatments can affect someone else, if that is your question.
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1 ReactionHas your husband had a genetic test? I did at City of Hope in Duarte, CA and they found one for sure mutation. Then 2 years later diagnosed with MDS and have a TP53 mutation. I had a bone marrow transplant 2 years ago.
Seems impossible to share a blood disease like this with another.
Keep us posted. I know a moderator will post soon.
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4 ReactionsMutations that lead to MDS and Leukaemia can be hereditary of course. Can’t speak of all blood cancers, but for AML and MDS some of the most common heredity mutation is germline DDX41. There are also other such mutations, including CEBPA, RUNX1 and even TP53, but those are less common. These mutations can be somatic (acquired) as well.
Make sure with the doctor/hospital that when doing the bone marrow biopsy that the NGS panel includes all such mutations. MDS/AML is a very heterogeneous disease and its biology, dynamics and treatment - and survival outcomes - can be significantly different depending on the specific germline and somatic mutations. For example, MDS with DDX41 is generally considered to be a more favourable blood cancer by industry classification - and with better treatment outcomes - compared to some other forms of MDS or AML.
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5 Reactions@katgob My husband is just starting into testing his bone marrow. We are older now, but he did have a sister who died of a sudden attack thought to be flu/pneumonia, but it turned out to be leukemia and she died within two weeks of that diagnosis. Again, I am wondering about hereditary influences.
Hi @patriciakennedy Most blood cancers such as MDS and AML aren’t hereditary. Random acquired mutations during a lifetime can bring about a change to the DNA. There can be familial ties if there is an underlying predisposition to the defect. But generally, it is some random mutation that wasn’t preventable.
I found a quick-read for you that sheds some light on MDS from Biology Insights:
https://biologyinsights.com/is-mds-genetic-acquired-vs-inherited-risk-factors/
I’m sorry to hear your husband’s sister passed suddenly from leukemia years ago. She most likely had AML or acute myeloid leukemia. It can be very sneaky, not causing much of any disturbance until it’s at a critical stage. Thirty years ago there was very little chance to save her. Now, with the advancement in cancer treatments, we have some amazing options for patients with AML, MDS and so many other blood cancers.
My personal story is that I had AML 7 years ago. As little as three weeks before my diagnosis I was still tromping through the woods on snowshoes for hours! No worries. Then a rapid decline in my health which was very much ‘flu-like’ until I was rushed to the hospital. Thanks to an amazing oncology team and better living through chemistry, I’m here to help others through their cancer journey.
Whether or not there is a genetic link to your husband’s possible MDS, you may never know. And this isn’t the type of cancer where preemptive treatment would benefit, if you’re concerned about other family members.
Your husband (and you) are at the beginning of a new journey. The bone marrow biopsy, along with genetic testing will help his doctor determine the type and scope of his MDS. There are different types of MDS, some more aggressive than others which require treatment. Some require only monitoring for the time being. If you have any questions, please don’t hesitate to drop them right here in the conversation. There are quite a few MDS members, along with myself, who will be happy to answer your questions or allay your fears. ☺️
When is your husband’s bone marrow biopsy scheduled? What were his symptoms leading up to his diagnosis?
I was diagnosed on April with MDS with DDX and del5q. My brother is going to be tested to see if he carries that gene. The doctor started me on Lenalidomide 5mg everyday.
We wish you and your brother the best outcomes possible.
Sincerely,
Mike & Pat