Hi all before I begin my 'Saga', I would like to wish you all a 'Better New Year'.😀
I am still waiting for the urgent needle biopsy for the large lump in my stomach, which was discovered in a recent 'Cat Scan'. Until that is completed my Haematologist cannot tell me the exact treatment I need to go on.
I was told last April that my bloods etc showed that I was ready to come of W &W, which I had been on since Jone 2018.
Soon after that I developed 'Bells Palsy' which did not clear with the usual medication. I was given an MRI scan which showed a small moving tumour in my Parotid area. After 3 inconclusive biopsies, and examining my health records they decided that it was most probably a 'Pleomorphic Adenoma',
I was told that it was probably connected to two benign tumours taken from my neck in 1974, 1984 respectively. The last one being treated with 'Radium'.
During the investigations regarding the new tumour, my CLL treatment was put on hold. In November I was finally given the all clear to start CLL treatment. Regarding the tumour, I was told that they were reluctant to operate, due to my age, and underlaying health conditions. Radium treatment is out of the question, as they don't do it twice. So, my (MDT) 'Multi Disciplinary Team' have decided to monitor me and do another MRI in February.
To add to these problems, my Haematologist found that my kidney was not functuning properly, I had recently changed my Blood Pressure Pills, as my Chest Consultant thought that that one I was on was causing a persistent cough. The new one he put me on seemed to be effecting my Kidneys. I am now back on my old BP pill at a lower dose.
I was now ready, I thought, for CLL treatment to commence, but another scan showed a large lump in my stomach thus, the needle biopsy. Once the result of that comes back, I hope) treatment will commence. (At last)
For the last two months or so I developed night neck sweats, a week ago they developed into the full 'Monty' body sweats, 4 T Shirts, wet bedsheets, etc. I don't know if this has anything to do with my weight which has dropped 9 pounds in 6 weeks.
My fatigue is also worsening, and it is hard to move about the house. Over the last week I have lost my appetite somewhat, part of that may be down to the 'Bells Palsy' as it is difficult to masticate my food, and I end up giving up trying.
My Haematolgist has been update on all of this, and I am waiting to hear back from her, soon.
Any views, observations, or advice will be very much appreciated. or if anyone has, or is, experiencing any of this, your thoughts would be beneficial. Kind regards all. Ron;
Written by
Vindicatrix
To view profiles and participate in discussions please or .
I am in your age group 71. Have been generally healthy. I walk about 3 miles a day. Golf once to twice a week when weather is good, a lots of gardening.
I am in the States, Rochester, NY. I was diagnosed officially 2016.I have been through two treatments that have helped me respond very well to the CLL. One study abrutinib & Venetoclax fixed duration2018-19. 98% Were still doing fine when I relapsed with a developed mutation to BTKs. Started Venetoclax again in 2022. Unfortunately, I have a very aggressive form of CLL. Most, do not so this definitely may not be your case. Recently, two weeks ago I started feeling very off. I quickly faded in energy, abdominal pain, darkening urine (I do drink enough water), increasing cough. My GP sent me for a battery of tests and coordinated with my oncologist. Bone marrow aspiration and ultrasound revealed some blockage near my liver and my CLL returning. I’ve been put on prednisone. 3 days, it has made me feeling normal again.
This is just a stop gap until they find another treatment for me! Most likely pirtobrutinib. The reason I share all this, is to encourage people to get the best, expert care possible. And to let you know there are many new treatments available for the many different types of CLL conditions people have.
Know your own healthy situation. When you see changes happening, often time slowly, but if quickly respond and get medical attention. AND find your CLL specialist ASAP.
So sorry to hear you appear to be getting the CLL night sweats. It's difficult to get a good nights sleep when getting woken up every few hours, drenched.
It sounds like your CLL/other tumors are pulling your nutrition, hence the weight loss. I make a "breakfast shake" that contains most all of my daily nutrition needs. It's easier to just sip something even if it takes several hours to drink it down. I mix plain egg white protein in a blender with ground flaxseed (got to have some fiber plus omega 3 source), powdered beet root/greens( if I can't eat veggies, at least I get some of the phytochemicals), cocoa powder, olive oil, (cocoa + olive oil are heart healthy, plus, you need some healthy fat in a meal) and frozen strawberries. We filter our water, no fluoride in it, so I add dulse since I don't buy iodized salt. It tastes somewhat like a chocolate strawberry milkshake.
My personal shake concoction has a few other things in it too, just, the above is the basic. I can't use commercial products, the chemicals (even "natural flavorings") set off my fibromyalgia. I do think some of the dry protein powder mixes generally are better than liquid things like Ensure, which often contain a lot of added sugars. So you may want to look at swapping one meal for a simple protein shake; nothing to cut, chew, etc.
With you mentioning kidney problems, you shouldn't drastically increase your protein intake without an OK/monitoring, even though you are losing weight. Hydrating properly will be super important when you start treatment, so the dead CLL contents don't potentially injure your kidneys. If you haven't spent much time calculating & measuring out how much daily fluid you ingest, now is a good time. You'll need a bit extra with the night sweats, unless told otherwise. Something to do, not too strenuous lolol! And many people feel much better if they happen to have been under hydrating, then start getting the right amount. I have several glass growler beer jugs; I fill one daily and the goal is to empty it. So I am not counting/calculating, just, empty the jug haha!
Vinducatrix - It is a very unpleasant experience to feel like your body is driven by supporting what’s wrong with you rather than “you”. I am sorry you are having to balance so many issues simultaneously.
I have been on Pirtobrutinib since November 1, 2022 and have had very few side effects. My heart has not been affected. No digestive issues. My lymph nodes and spleen shrunk very quickly. My skin was super sensitive for the first 30 days. Maybe that would be a good choice for you when you start treatment.
The Pirtobrutinib has also been working quite well.
So sorry that you have so much going on. Your symptoms does sound like its time for treatment but first the biopsy, right? I would be sure that there was clear communication between you & your treatment team about your symptoms, the timeline & the whole plan basically. I would start calling early as possible because I move slow & I get leery if I don’t know the plan. Just never a dull moment when you just really want a dull moment, smh #GODSPEED 🙏🏾
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
CLL FCR update - 3 years on. 
To all the Jewish members : Happy New Year
