Hi @AndyT good news about you neutrophils heading in the right direction…
I am glad your boys understand, but it cannot be easy and I am sure it is stressful for all of you.
I look forward to hearing more about you all, look after yourselves
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Good morning,
I was just thinking
why not treat hairy cell leukemia with dialysis?
in theory, destroying mutant cells in our blood should help.
this approach should be less aggressive than chemotherapy.
Maybe we will be interested in dialyzer manufacturers or scientists in developing such a method of destroying mutant hairy cells?
what do you think about it?
Interesting thought @Krzysztof. I am not a doctor or a scientist, just a fellow blood cancer patient with a different one to yours. However, with my limited understanding I think the origins of these blood cancers lie in the bone marrow which is the ‘factory’ for the blood cells. Therefore dialysis might have a limited effect? I will be interested to hear what others think? Warm wishes. Willow
The chemistry we are using now does not cure the disease, it only destroys clones of the hairy cells. After chemo, the marrow continues to produce normal and abnormal cells …
During the first treatment with chemotherapy, I had a reduction of hairy cells from 80% to 20% (the test was performed one month after the administration of chemotherapy, I keep my fingers crossed for the fact that the chemistry still working in my body will kill some of these hairy cells).
Therefore, I thought that if the hairy cells do not die and are not destroyed by the body during standard processes that take place in the body, they can be removed mechanically …
As I understand it, you get so much hairy cells that there is no room for normal cells in the body. Therefore, the spleen destroys the newly produced healthy cells, because there is no more space for them, the body is constantly producing new ones and the spleen has more and more work, so it grows, etc. Hairy cells do not do their job, so the body collapses, etc. but as a layman this is how I explain it …
Perhaps someone will solve the problem with blocking the mechanism of producing hairy cells or lead the body to recognize the hairy cells as harmful and remove them itself …
Under the right conditions, if a way is found to destroy hairy cells, we will ensure that cells are destroyed at a level similar to their production … that should ensure many years of life, until solutions such as mRNA provide another way to fight cancer:
https://www.cancer.gov/news-events/cancer-currents-blog/2022/mrna-vaccines-to-treat-cancer
https://biontech.de/science/pipeline
https://www.pfizer.com/science/focus-areas/oncology
Hi @Krzysztof my thoughts are that my blood cancel does not follow my logical thoughts or even the way other cancers are treated.
Your thoughts are beyond my limited brain, perhaps it is for someone in your medical team and please do let us know what they say.
Look after yourself
Erica so I thought that I can live and wait for someone to come up with something and help me, or maybe better if I can come up with something myself and even if it doesn’t make sense, it will give me some hope …
I found an article about the fact that the protein encoded by the EP300 gene - can accelerate or inhibit the development of cancer: including lymphoma, leukemia, bladder cancer and SCLC.
" Recent studies demonstrated that the combined loss of EP300 and CREBBP, specifically the loss of BRD and HAT domain activities, suppressed the proliferation of Kras -mutant lung adenocarcinoma, lymphoma, and leukemia cell lines"
https://www.science.org/doi/full/10.1126/sciadv.abl4618
But this article is black magic to me, but it gave me hope that someone would use it to fight cancer.
New to the forum and a HCL patient since 2014. My experience was very similar to Andy T: cladribine 5 day protocol followed by admission via A&E with neutropenic sepsis. My counts were all basically zero.
Now I’m coming up for 8 years in remission and I’m as active as I was before getting ill. It’s something always at the back of my mind but I try not to let living with HCL prevent me from doing anything. I did struggle with my mental health both whilst waiting for and post treatment, for me that was and remains the most difficult thing - but help is out there.
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@Mattt I am so glad that you have found our forum although I realise you really would have benefited from it 8 yrs ago (before it started).
Your experiences are so useful.
My experiences of being diagnosed 18 yrs ago mean that mental health issues were just not considered at that time, it is only in retrospect I realise how hearing my diagnosis traumatised me and how it changed my emotional state and I have never dealt with what personally stresses me well since. I also feel anxious before and during all medical tests.
Today I also have a good quality of life and these issues do not rule that.
Thanks @Mattt for making me look at myself.
I look forward to hearing more about you, look after yourself