Why are there no discussions about cancer of the blood?
Are we just “ step children” because doctors can’t just cut our cancer out? Or maybe doctors don’t want to delve into a cure? No high dollars for simple treatments? Or are there really simple treatments just drugs?
85 year old widow in up hill battle of Hope since 2014.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Thanks
Lori,
You offer such encouragement to me and others. I have AML that is not curable and can not have a Bone Marrow Transplant. My Acute Myloid Leukemia is a P53 strain and Mayo did not expect ME to have between 2 and 5 weeks in January 2024. Our precious Lord has seen it fit for me to still be here and I am so thankful. Today is May 25, 2024 and I have had 3 rounds of Chemo that were not fun at alll…who can say they love Chemo only it has kept me alive along with support, love and prayers of my humans! May each day be a choice to live it to the fullest.
Thanks for being our Mentor.
Hi @reedabcdv. Oh golly, I’d say Welcome to the elite club of AML members but it’s a dubious club to be sure…
I hope I can give you some more encouragement. While a bone marrow transplant is the only potential cure for AML at this time, there are many newer drugs on the market that can really help slow the progression or even have patients reach a good point of remission. Often this is done in conjunction with rounds of chemo such as you had.
You already beat the odds back in January! Sounds like my initial diagnosis. I was less than 50/50 and it wasn’t pretty. Just shows we don’t have to be statistics, right? One of the great memes my chemo team at the hospital put on my wall was this: The devil whispered in my ear, “You’re not strong enough to weather the storm. I whispered right back and said, I AM the storm!” I still think of that to this day and it’s 5 years later. So, Be the Storm!!
Chemo is not easy but you’ve weathered it this far! Are you on any maintenance meds after your initial rounds of chemo? Are there more chemo rounds in the offing?
I imagine that there are fashions in medical research, as in other fields. It also seems likely that there are ebbs and flows in research that mirror the ebbs and flows of money for research. Sometimes, however, the problem is also just hard.
My oncologist used to work at the National Institutes of Health (NIH) doing cancer research. He told me of a co-worker who could cure liver cancer - in a petri dish. The cure did not work in humans, and they eventually found out exactly why it did not work in people.
I showed an article about what I thought was promising AML research to my oncologist. He saw what it was about and he then told me that we could cure leukemia 25 years ago - in mice. I am gradually learning that there is a difference between research in a lab and clinical practice in humans.
Sometimes a treatment will almost work. I spoke with a man whose sister was cured of metastatic breast cancer by a bone marrow transplant. It worked (for her), but the treatment was discontinued because more women died from the new treatment than would have died from the best conventional treatment.
NIH and the National Cancer Institute (NCI) are national treasures, and I can only hope that I can hang on long enough for something new to become available.
Hi @mkt24, I hope you have seen all the blood cancer-related discussions, in particular those related to MDS.
See all MDS discussions: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=MDS&index=discussions
Here is a list of clinical trials currently underway for MDS at Mayo Clinic https://www.mayo.edu/research/clinical-trials/diseases-conditions/myelodysplastic-syndromes
Let me know if you would like me to change to the title of this discussion to reflect the topic of your concern.
Yes have continued my reading of resources for blood cancer. And will continue to do so . No reason to change title unless others want to.
Other sites give some help but not all. Cancer.com, Mayo Clinic, md Anderson and many others. Just takes time and energy to dig into sites. Thanks for your help.
@ahuser0, welcome. What type of cancer are you dealing with?