Why are there no discussions about cancer of the blood?

Hi @mkt24 There are several discussions about cancer of the blood in this Blood Cancer and Disorders group. That’s the goal of this group, to offer support for people with leukemia, lymphomas, MM, MDS, blood conditions like PV, ET…we discuss them all.
Or are you asking about why the medical community isn’t talking about blood cancers? I assure you they are. It’s a huge area of discussion, research and development. I’m a bi-product of such research.

I’m a mentor in the blood cancer group because I had a very aggressive form of blood cancer, Acute Myeloid Leukemia. I am now 5 years post treatment~which included a bone marrow transplant, and cured. So I don’t feel that we are orphans because there are no tumors to cut out. There are a plethora of new drugs that have been developed to treat many of these conditions that weren’t available in the past. Unfortunately there are no simple treatments to cure blood cancers.

If I remember correctly, you were diagnosed with MDS which has several treatments in order to slow the progression of this disease. At this time the only potential cure is a bone marrow transplant. But it isn’t always a good fit for some patients because can be quite taxing. Years ago meds for MDS or AML didn’t exist and patients weren’t around very long after diagnosis. Now, life expectancy has grown appreciably. Blood cancers are incredibly complicated. There are no drug cures yet…but I’m optimistic that they are on the horizon.

I’m sensing some frustration in you today. What can I do to help you?

Aransep for MDS not anemia. Since beginning of diagnosis. Keeps HGB up to 10 if possible. Another drug was used for anemia control. Too old for bone marrow transplant. Did have two blood transfusions done by quack in a killing clinic the first year. Now new (doctor 2 years) listens at Texas Oncology.
Yep can be frustrating to read where research is being done for other cancers.
A good friend has leukemia for 20 years, but is treated with care and compassion. Her symptoms are were never same as this MDS and was told it is not same. More can be done for leukemia as more research has been done on it.
One can only Hope and Pray.

With your MDS you aren’t able to produce enough red blood cells. Aransep, developed for patients with anemia to increase their red blood count is helping you keep your hemaglobin count close to normal. So far, if you’re not requiring any treatment for MDS since 2014 other than the Aransep, it appears to me that you’re pretty stable with the disease.

From personal experience I know that there is a huge amount of research being done for conditions like MDS and AML, to name only a couple. I don’t know what form of leukemia your friend has had for 20 years but there are some forms of chronic leukemias that develop much slower than others, some never requiring treatment or are in an active surveillance program.
But there is a vast amount of research in this field. I can provide you with a large list of current research papers if you’re interested. My own transplant doctor is continually researching and publishing papers and running clinical trials. He’s just one of thousands of doctors and researchers globally, along with big pharma, helping to find treatments and cures for leukemia. These are complicated cancers with no simple fixes.

thanks for your thoughtful and helpful replies... as an 81 woman with many years of CLL, it is my experience that you can live well with this, if you are lucky. More recently, a diagnosis of PV adds more to my blood profile, but it gives me hope that Hydroxyurea manages some of the symptoms well. I am aware and grateful that a huge amount of research is ongoing and always hopeful for cure possibilities.

Some MPNs, MDS, and other cancers are "orphan" cancers. In the U.S., the Orphan Drug Act refers to treatments for diseases that affects fewer than about 1 in 1,500 people. The act was designed to encourage research and development of treatments for orphan diseases. The thinking behind the act is that the market for an orphan drug treatment is so small that companies wouldn't bother with the research and development needed to produce a treatment. The Orphan Drug Act has stimulated more treatment options, but it has not done much to keep the cost of newer treatments affordable.

The American Hematology Society (ASH) has a big conference every December where pharmaceutical companies and blood cancer researchers and clinicians meet to discuss all types of cancer. If you look at their reports (Dr Mesa at Mayo used to give updates on MPN news from ASH), you will see lots of discussion on orphan blood cancers.

One problem that makes treatment for rare blood cancers is diagnosis. GPs often see abnormal blood counts but aren't sure what they're looking at. Mine went undiagnosed for probably about 5 years because symptoms seemed more age related and platelets were only in 500s. In addition, the tools to diagnose the problem sometimes need improvement. Before genetic mutations could be determined, thrombocythemia was diagnosed by process of eliminating which diseases it wasn't. Now diagnosis is quicker and more precise.

I realize none of this addresses the frustration patients feel. But it may help to know that there is lots of movement behind the scenes, doctors do care, but diagnosis and treatment methods take a long time to come to fruition and to become affordable.

Hang in there, everyone! If you have a rare cancer, you might ask your doc if he can forward your patient info to a research center. Collecting data pools with as many patients as possible helps researchers spot patterns and pursue new lines of research.

Good morning, @marnix! I remember about 25? years ago, a close friend’s mother was diagnosed with AML (acute myeloid leukemia). For her, there were no treatments except intensive chemo, which was too aggressive for her, and she quietly slipped away within a couple of weeks. My brother died at the age of 27 in 1969 from Hodgkin’s Lymphoma…there were no helpful treatments. Fast forward to present day and the 5 year survival rate for Hodgkin’s lymphoma is around 95%.
With all the amazing breakthroughs from research of blood cancers and development of new drugs, people with blood cancers such as AML, CLL, MDS, Lymphomas, and conditions like PV and ET, now have some options to help control the progression and sometimes provide a durable remission.
Potential cures involve bone marrow transplants, Car T therapy and targeted therapies such as CAR NK cell therapy, (which is now being tested on other forms of cancer).
Like you, I’m so grateful for the huge amount of ongoing research. Because of it, I’m alive through the amazing gift of someone else’s bone marrow. 😉

I’m happy to hear you’re doing well with the hydroxyurea. Better living through chemistry! Do you remember the old film clips from science class in the 60s? LOL.

@nohrt4me rt4me
Thank you! I didn’t know any of that so it was very useful information for me. Of course, I learn something every day from this forum.

@nohrt4me thanks for the info. I did not know about orphan diseases and will look into the act.

Thank you for your reply.

I fully agree with your comments.

Hopefully AI will increase the knowledge of the various blood diseases.

Thanks again for your reply.

If you go to LLS.org (Leukemia Lymphoma Society) website, there is a lot of info on the website and they will also mail you a ton of information......best of everything