Posted on 02/12/2025 8:34:35 PM PST by ProjectArcturus
I was diagnosed with CLL a couple of years ago after having it for at least five years. I went from doctor to doctor trying to figure out what was wrong, getting dismissed by many. I had a PET scan recently and got results that it has progressed. Uptake in my throat and bone marrow, which wasn't in the scan I had two years ago. I've been having trouble swallowing for 2 1/2 years now. I went on a chemo drug called Calquence for a year after I was first diagnosed. They then switched me to Brukinsa. I went off them because I was dealing with a lot of fatigue and side effects and my doctor wanted to see if they would improve if I stopped for a while. They did not, since everything got worse after I stopped. During this time, my oncologist retired and I have a new one. He wants to wait a month so he can decide what treatment would work best for me. In the meantime, I'm on magic mouthwash for a while that my ENT prescribed me. I'm smelling an odd chemical burnt sugar smell that no one else can smell. I was hoping I would have gotten better by now, but I haven't. Now I'm dealing with this smell that has doctors baffled.
Advice, stories and prayers would be appreciated. I've looked up info on treatments and most people get diagnosed in their seventies. I'm in my forties. I previously had thyroid cancer and think the treatment gave me CLL. The lymph node swelling occurred right after the I-131 treatment. I've been looking at different oncologists/hematologists and looking to get a second opinion because I just don't feel comfortable with the new doctor.
Where are you? State? City?
.
Look up the treatment threads with CLL as a keyword.
Here is one of them with good success rate for a more aggressive CLL:
https://medicalxpress.com/news/2023-05-combination-therapy-outperforms-chemotherapy-clinical.html
After a couple years, only 18% has a recurrence using a non-chemo combination.
may our Lord grant you strength and complete healing though this time of trial. may He send, guide and direct your caregivers who will treat you. and most of all may He grant you the ‘peace that passes all understanding.’ His Will be done. in Jesus’, the Great Physician’s, Name, I ask. Amen.
i haven’t read much about blood cancers except that they have advanced greatly in custom tailored medical treatments these days at Stanford. i know of two people personally who have had excellent results (cures or remission) there. one eventually had a bone marrow transplant and is cancer free.
you can ping your prayer request our beloved stars & stripes forever with a . comment, iirc, to request that she add you to FR intercessors thread. may God grant His perfect Help and Blessing you and yours!
I was diagnosed with AML two weeks ago. Life is now trips back and forth to the hospital for treatment.
There is a Leukemia sub-Reddit group where people exchange information that might be helpful. I wish you well!
Please go to Cancercommons.org. They will help you. It is free. It was founded by an AI billionaire 25 years ago after he nearly succumbed to cancer after some poor treatment and he decided that there had to be a better way to get information on the best treatment. There is a panel of MDs and PhDs who will look at all your medical data and let you know if you are receiving the most cutting edge care. It helped me and I recommend it.
Im so sorry. I had AML.
Two weeks ago? Omgoodness. Have you started induction? I was diagnosed in 2015.
You said you’re going ba k and forth. AML is inpatient as they need to bring your wbc to zero. What is your treatment protocol? I had 7+3.
I have smelled a chemical/burnt sugar smell before, at Yellowstone, from those mud pots and thermal springs. So, maybe sulfur is what you are sensing.
I will pray for you tonight. 🙏 I’d say go for a second opinion. Private message on the way...
I have a similar diagnosis of Chronic Lymphocytic Lymphoma and it is linked to my Cold Agglutinin Disease. I was diagnosed at stage 4 in 2018, although I was showing symptoms as early 2002/2003.
I am sorry you’re going through this and I will be praying for you.
My treatments consisted of Rituxan, then later Rituxan along with Bendamustine. Both were easily tolerated and the last time I needed treatment was in the fall of 2021.
I advise adding to your regime drinking Essiac tea. You can buy it on Amazon.
Also, eat about 7 - 20 Apricot pits every day. They contain laetril which causes apoptosis. Do NOT eat them as you would nuts. They also contain a naturally occurring toxin (amygdalin). When eaten, this toxin can react with stomach enzymes and release a poison (cyanide) in the gut. So, be careful with this one.
Do NOT EAT anything with sugars. This includes rice, bread, potatoes, corn, or legumes. Carbs = sugar.
Finally, TAKE IVERMECTIN.
All of my advice is not medical advice. It is just what I have done. At present, there is no cancer seen in my blood. As long as I’ve kept my CAD under control, my cancer has “disappeared.” I use scare quotes because my hematologist/oncologist assures me it is actually still there.
Feel free to ask me anything. Just bear in mind, I have a similar, think “parallel”, illness. It is not quite the same.
Oh, one more thing, I literally travel around the world to see my doc. I think he is that good.
In reviewing the replies you have so far, I can see most of the crazies are still around. Probably the last thing you want is a diagnosis and treatment from some internet forum, Facebook, Google, etc. That is, unless it is a valid medical site like MD Anderson, Memorial Sloan Kettering, or the like. Even then, you need to be seen by a medical professional!
By the way, I'm still waiting for someone to reply with the notorious "coffee enema" treatment that can only be had in Tijuna, Mexico for several thousand dollars.
CLL is somewhat rare, with about 20,000 cases a year, so most docs, including local onc docs, see only a handful of patients a year and do not have first-hand experience as they do with other cancers like breast, prostate, lung, and hard tumor cancers.
What saved my life was to seek out the best medical advice I could find from a top cancer research center. There are only about 10 in the country. My choice was MD Anderson, the top cancer center in the country where they only treat cancer.
CLL is highly treatable, with a five-year survival rate of well over 80%. There are numerous treatments that can only be determined after the proper diagnostic testing, which most local and even regional centers don't have. You don't have to be treated at that top center, but get a second opinion at a minimum.
The bottom line, if you want the best option for survival, is to be seen and assessed by an expert in your disease. Anything less can be costly.
Here are a few good sources of top cancer centers around the country....
https://www.cancer.gov/research/infrastructure/cancer-centers
https://health.usnews.com/best-hospitals/rankings/cancer
https://www.oncologynewscentral.com/article/us-news-releases-2024-2025-cancer-care-center-rankings
Stop ingesting fructose in all of its forms, including fruit. Stop ingesting wheat and related grains. Build your diet around meat and fat, heavy on fat.
You won’t do any of these things, otherwise you wouldn’t be in this predicament. It was nice knowing you.
Two days after my diagnosis I was checked in the hospital for 5 days. I had four blood transfusions, two spinal taps in addition to daily chemo IV drip and in pill form. Then I was released.
Now they found traces of cancer cells in my spinal area. I have to back to the hospital for 7-10 days where I’ll be getting chemo injections via spinal tap every other day.
None of this is particularly painful. I haven’t experienced side effects to speak of, other than some fatigue. I don’t even feel sick. The future is filled with uncertainty, especially the next two months.
I want to echo what nagant wrote: stop eating fructose in all its forms.
Actually, anything containing any form of -ose. Those are all sugars. That means fruit or milk.
Consume meat and fat. Fat is good for you and is needed by the body. Avoiding lactose does not include heavy cream, butter or cheeses.
I disagree with nagant’s last paragraph. You can make this change.
It sounds like you have cns involvement. My induction was a 30 day stay in the hospital. It was 24 hr chemo for a week straight. So after bringing the wbc count to zero, they keep you there till neutrophils reach a safe level. Without complications , it’s a 30 days stay.
I went on to have a donor stem cell transplant. They discussed it at about the 2-3 week mark when the mutation info was fully available. Have they discussed this as an option?
Just saw this today; don’t know if it will be any help.
https://medicalxpress.com/news/2025-02-oral-arsenic-trioxide-leukemia-hong.html
Prayers up.
I’m sorry you had to go through with all that. 30 days is a long stay. My hospital stay was 5 days.
They found some mutated cells near the spine so I have to go to the infusion clinic 3 times a week for a spinal tap with a chemo infusion. Then I start the regular chemo treatments. The side effects are minimal, thankfully. Some nausea and headaches that disappear in an hour.
This is all new. I don’t know a lot of leukemia lingo I read and hear about. But you having 10 years gives me a lot of hope.
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