boosting your immune system after diagnosis and before chemo

Good morning, @cblanc. Phew, your mind is going a million miles a hour. Let’s take a deep breath together and work through your post.

First, let’s look at HCL or Hairy Cell Leukemia. Your body is producing too many white blood cells, specifically B-Cells. Only these particular B-cells have mutated and taken on a hairy appearance under a microscope. Because they’re no longer playing by the rules of the natural order, these cells keep living when healthy cells would die as part of the natural cell life cycle. With no off-switch, the leukemia cells keep proliferating and build up in the body causing symptoms as they start crowding out healthy blood cells. As it progresses and the percentage of defective cells overtake the healthy cells, it could put you at greater risk of serious health issues.

You’re already experiencing symptoms of fatigue, difficulty breathing and brain fog which can come with the decrease in healthy red blood cells. The spleen can enlarge causing pain under your upper left rib cage.

While it’s admirable that you’re doing all of these heroic efforts to boost your immune system and change the course of this disease, as your doctor and various others you’ve consulted have said, “This isn’t going away on its own”.
I also want to mention that some herbs, supplements and even foods can have a negative impact on blood cancers or treatments. So your hematologist oncologist needs to be made aware of anything you’re taking. When I was on chemo, absolutely no turmeric, pomegranate juice, etc..

I understand that just the word “chemo” can strike terror in strongest of people. Coming from a place of experience, I’d rather have chemo than let the cancer cells run rampant in my body and snuff me out! From what I’m reading in the Mayo website for treament for HCL, is “Most people get a complete or partial remission after chemotherapy. Remission means you have no signs of cancer.”
https://www.mayoclinic.org/diseases-conditions
Reading through the list of treatments for HCL there are options such as immunotherapy with meds like Rituximab or chemotherapy, sometimes the combination of two or more and not as draconian as you’re imagining.

You wrote, ‘I understand it [chemo] is designed to basically eradicate my immune system and reboot to see if I can stop producing the mutation of cells and start producing a more normal mix of red, white, and platelets “ To clarify, that would only happen if you’re getting a bone marrow transplant.
But what the chemo or treament would do is knock down or eliminate the defective cells. Thereby giving your healhty blood cells the opportunity to take the dominant position in your blood stream again.

I think you’ll be a little more reassured after reading through some of the replies in this discussion:
Hairy cell leukemia: What are the treatment options?
https://connect.mayoclinic.org/discussion/hairy-cell-leukemia-2/
In answer to your question, if you already have 35% out of 100% of your cells being cancerous and you have the opportunity to drop that to zero and be in remission, it would seem like an easy choice. Does this make sense?

Lori, thanks for your reply, and yes my mind is going a million miles an hour and Is all over the place. (May have something to do with my ADHD) Lol. And perhaps as much as I'd like to believe otherwise, fear plays a part.
That information was very helpful. Feel like I understand more clearly what is happening to me. And indeed I'm less afraid chemo will kill me than the cancer and/or it's side effects. in fact I'd like to get it over with as soon as possible and wonder, based on what you said about targeting the mutated cells, why would they want to wait treatment instead of immediately treating it on diagnosis? Wouldn't most people better tolerate it then rather than later?
Two questions or maybe a question and a clarification.
If the chemo is targeting the bad white cells and I've learned in this variant they are mature cells that mutate instead of immature cells, it sounds like what ever I can do without taking things that would be detrimental to me, that boosting immune system before treatment would not prolong the wait time before treatment and would be helpful.
And two, I also have high blood pressure, type 2 diabetes, high cholesterol, and hypo coagulative blood (been hospitalized three times for PE) and some kind of inflammatory issues joint pain, overall stiffness that eased somewhat with activity.
I am concerned that chemo might be harder to tolerate because of these issues and or the medications I take to treat them.
Is that a concern or just more of my mind taking me places better left alone? Lol
I have seen a few posts here and will follow the link you have provided, the more I know the better armed I feel and more comfortable with the choices I make.
Thanks for reaching out this is very helpful!

It’s understandable to feel overwhelmed and anxious with a new diagnosis. You’re doing great…asking questions and gathering as much information as possible can really help the brain to process this new situation. Having the info, making a plan to move forward is better than sitting there feeling stuck. ☺️

HCL, from my understanding, progresses slowly and often people don’t need treatment until the they have symptoms or the HCL cell percentages are over 30%.

Reading through various articles, chemo is usually the go-to treatment as it’s effective. Here’s a link to one of the articles from The American Cancer Society with info about HCL, when to treat and meds used for treatment.
https://www.cancer.org/cancer/types/chronic-lymphocytic-leukemia/treating/hairy-cell-leukemia.html
Answering your questions or thoughts in order: You wrote:
” If the chemo is targeting the bad white cells and I've learned in this variant they are mature cells that mutate instead of immature cells, it sounds like what ever I can do without taking things that would be detrimental to me, that boosting immune system before treatment would not prolong the wait time before treatment and would be helpful.”

I think I understand what you’re saying. Being as healthy as you can be going into chemo may help with your recovery. But from a similar experience with the type of leukemia I had, being proactive with supplements and diet won’t slow the progression or replicating of the cancer cells.
Albeit slowly, without intervention and no “off” switch, the bad cells will keep proliferating, leaving no room for healthy cells…like bullies with hairy elbows! Treatment should knock them on their little bums!

However, to clarify, the chemo isn’t only targeting “the bad white cells’. It targets quickly dividing cells, such as cancer cells. But it’s not discriminatory and can affect other rapidly dividing cells such as hair follicles, finger nails, mucosal tissue in mouth, or digestive tract and other blood cells. These are all generally temporary side effects.

The goal is to knock out the cancer cells. With those gone, the normal blood cells regenerate rather quickly and again take up their proper space in your bone marrow and blood stream.

Question 2: LOL. Passing the buck on this one! Your hematologist oncologist is the person who should be answering the questions about your co-morbidities with HBP, diabetes, cholesterol and blood coagulation issues and the treatments with HCL.

My not answering is because I’m not a doctor, nor do I play on TV! 😅 So don’t read into my ‘non comment’ with your ‘mind taking you to places better left alone’. Your comment seriously had me cackle out loud! We are gifted story tellers with the stuff we feed into our brains… Been there myself.
Anyway, for my 2 cents worth, of course going ahead with treatment is a personal choice. But to do nothing is to do nothing…

Thanks, I appreciate your candor, glad I could bring a giggle! 🤭
I absolutely agree doing nothing is doing nothing.
I’d love to get this over with so I could get on with my life. I was all set to do that in early January as was suggested by my doctor in December.
He said that it would likely be time to do it then.
But because of the improvement in my platelet count in January over the previous month the doctor decided to wait another three months and recheck my counts again at that time before deciding whether to start chemo or not.
Very frustrating,
that’s what made me wonder if I did nothing would I speed up it’s progression, and was I slowing it down by trying to improve my immune system.
Hence putting therapy off further down the road which is NOT what I want to do.
the only answer I get as to why we are waiting is
“ the cure can be worse than the disease” It seems as if I don’t have a choice as to when I start chemo, it’s all up to him.
Very reassuring 🙄
My insurance lists him as the only doctor in network that specializes in HCL so i’m out of pocket seeking out a second opinion, and because I’ve had to cut back to
part time, the money is just not there now.
So if i’m understanding what your saying,
I’m going to do what ever I can to help bolster my immune system, it seems that will have little effect on the progression of the disease.
it will advance how it will advance, no matter what I do.
So seems to me I’m not going to do anything to slow the progression or speed it up any more than it naturally would, just perhaps the healthier my system is the better I will be able to tolerate chemo.
Thanks again

There can be a real sense of frustration when it comes to dealing with blood cancers or conditions…for doctors and patients. Some conditions can literally take years to become an issue because they progress so slowly. Some, like AML, can come on like speeding locomotive! But what I’ve learned about mutated cells is that if they’re not taken out by the immune system, then the defective cells continue to divide and replicate…eventually crowding out healthy cells. Food, diet, supplements, again from my understanding, won’t reverse the mutation.

Foods and supplements can certainly have an impact on health and in blood cell formation as you’ve seen with the increase in platelets. There are foods which can increase platelets…you can read about them here: https://www.healthline.com/health/how-to-increase-platelet-count

It’s great what happened with your platelets. However there’s much more to your health issue than the platelet count. The other and perhaps bigger question would be; What is the current morphology of your white and red cells? By waiting, your doctor may be giving you a window to see what happens on that end. Who knows, miracles happen every day. Maybe what you’re doing is delaying the progression…
Whatever is happening, you’re not hurting anything with ramping up your health regime.☺️

Rooting around a little more for information this morning, I came up with this site! The Hairy Cell Leukemia organization. If you haven’t visited yet, it’s worthwhile. Here’s the link:
https://www.hairycellleukemia.org/hairy-cell-leukemia
When to start treatment is ultimately up to you with your doctor’s recommendation.