I'm on w/w for about 15 months. My hemo/oncologist thinks I may not need treatment for a couple of years at least, but......
My nodes are all swollen but have seemed to have stabilized. All my blood work is good. My issue is that I developed urinary retention about 12 months ago and am on flomax to help the flow. Putting me on proscar is now considered because my prostrate is about 2x normal size. Peeing 4-5 times a night is tough. When traveling I have to be alert to where I can get to a restroom every hour or less,
Has anyone else in this forum dealt with SLL/CLL and have prostrate issues? Specifically if anyone was put on intrunib while on prostrate reduction meds? Proscar type meds that reduce the size of the prostrate have their own nasty side effects and I wonder if there would be an adverse impact on any CLL intrunib or other treatment. I'm 68. 13q deleted. Thanks in advance.
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Awksom
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I have both CLL and prostate issues. I was diagnosed with CLL 9 years ago, but my blood counts are relatively stable ALC in the 30s and I'm probably a long way from needing treatment for the CLL. A few years ago I became concerned about peeing too frequently, was sent to a urologist who put me on Tamsulosin. On follow up visits it was suggested I had the operation , but I declined. Two weeks ago I had constipation and a possible UTI and went into urinary retention. I needed to go the emergency room where they put in a catheter.
The ER doctor/nurse said I had a large prostate.
After 5 days I went to my GP and had the catheter removed but went into retention again and back to the emergency room where they replaced the catheter. I now have bladder spasms for which the GP prescribed Floxavate? which has side effects of constipation and extreme drowsiness . I'm going to the urology dept of hte hospital on Monday where, hopefully, they will remove the catheter and I will be able to pee normally without retention.
I think I'll probably need the prostate operation sooner rather than later . I'm 65 and also only 13q deleted
Thanks for the reply. I would try and coordinate a call between your urologist and hemo oncologist.
The tamulosin (flomax) is helping me pee ok and stopped the 100pct retention I had but now I still get up 4-6 times per night. My prostate is 2x normal size so it is blocking part of my bladder in effect. My urologist wants to put me on proscar to reduce the size of the prostate, a process that takes 6-12 months. One of the side effects of proscar is enlarged tissues and a possible highly bad form of prostate cancer. My concern is that with my SLL / CLL and any future treatment with intrunib etc might make the situation worse.
So far the flomax is helping me but I just have concerns with the tissue related side effects of taking proscar to reduce the size of the prostate., which is 65 gram versus about 30 gram normal size. I trying to figure out if it's better to wait on the proscar unless there is some evidence that the tissue issues don't affect the SLL or just go for the surgery.
Thank you for posting this info. My husband fairly newly diagnosed 17p detection but regular doc said all this started in 2014 with prostitis. Enlarged 4 times. I do not know what ALC is but will look it up. Surgery has been suggested. Again thank you for help in this journey.
Spacee. In my area in the US they try tamulosin and proscar first before surgery. My nodes are quite SLL loaded at this point but not growing at a quick pace. Good luck on the surgery option. I assume your husband is not receiving any CLL treatment at this time? I would suggest going to a urologist who is familiar with CLL.
Awksom, I checked with him this am and is on the med that starts with a T. He says he gets up 2-3 times depending on what he eats. Though he has not determined exactly what. Switched to beer from wine and that helped a bit. Every bit helps. We are going to keep catheters (a few) on hand to hope to avoid ER trips. He says, too, that surgery is no longer on the table right now. No, treatment now. Thanks for the tip about urologist with CLL experience.
Thanks for sharing that you didn't know what ALC is. I had to look it up too but still confused. My lab work just gives "lymphocytes" counts. Is that the same as ALC?
Look in a section on the CBC , called differentials. It is usually refered to as absolute lymphocyte count [ALC] OR, LYMPH#, or LY... it is not a percent.
Simply put, the absolute lymphocyte count [ALC] is the same count as the white blood cell count [WBC] , but the former omits the neutrophils.
So the absolute lymphocyte count [ALC] contains B cells, T cells, Natural Killer cells and a few more in small numbers.
When absolute lymphocyte count [ALC] rises over time it is an indication of CLL progression, because the B cell population is expanding... thats why it is important in CLL
Ours just gives the "lymphocytes" counts too. Chris gave an explanation (thank you Chris!!) but it is clear as mud to my brain right now. I will read it over and over a few times.
My sister worked in a hospital lab as a Medical Technologist for all of her career. She said they only did "lymphocytes" not the ALC. A speciality lab doing it? She said that they are looking at a smaller part of the lymphocyte.
Hello! I am 66, diagnosed CLL in 2003, and on w/w until I developed blood sepsis in 2011 leading to a 3 week hospitalization and inpatient chemo. My oncologist diagnosed CLL recurrence a month ago and I was startled on ibrutinib 6/12/17. I was already on flomax due to urinary retention following a severe UTI in October. So far, I am tolerating ibrutinib fairly well except for achy stiffness in my hands and knees that comes and goes. My only concern about the flomax is that I am taking so many meds!
I think the surgery has more long term side effects than Flomax. Before this incident with retention I was only getting up oce or maybe twice in the night
SLL stands for Simple lymphocytic Lymphoma, a non Hodgkin B cell lymphoma. It is basically the lymphoma cousin of CLL and treated in essentially the same way. In my case my lymph nodes are quite swollen and there is very little activity in the blood at this time although some is starting to creep in. My treatment would be the same as CLL. Quite a few people start with SLL and then go into CLL.
13q refers to the specific gene which, in my case, has been deleted.
'An indolent (slow-growing) cancer in which immature lymphocytes (white blood cells) are found in the blood and bone marrow and/or in the lymph nodes. Chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) are the same disease, but in CLL cancer cells are found mostly in the blood and bone marrow. In SLL cancer cells are found mostly in the lymph nodes. Chronic lymphocytic leukemia/small lymphocytic lymphoma is a type of non-Hodgkin lymphoma. Also called CLL/SLL.'
A question - I'm not yet at the point of needing treatment, but my prostate is definitely swollen... do any of you have a bit of pain (NOT severe) in the bladder/prostate area when it fills up? I've had the prostate looked at a couple of times, and they reckoned then that it was a benign swelling... so, can that cause a bit of pain?
I've never experienced any pain except when I had 100% retention and then it was tremendous eased only by the catheter placed by the ER nurse. FYI at or near 100% retention is considered a Medical emergency in the order of a stroke or heart attack. I suggest you see a urologist but make sure you mention you have CLL.
The planned catheter removal went badly I was still in retention. The nurse did a rotten job of reinserting the catheter and called over the doctor who did it with ease. I was in pain, vomiting and asked to be admitted to the main hospital in the group. The treatment there was excellent and the consultant saw me next morning saying I had to have the operation
I couldn't argue
Either wait 6 months on the NHS with a catheter or go with him privately and have it done next week. I chose to go private at a cost of £6,200. I am now recovering well but definitely have retrograde ejaculation
Hello 🌞 Now 66, in remission from 2011 until this year. I was started on tamilosin in November following a serious UTI which led to high PSA. It was still so high in February that my oncologist recommended that I have a biopsy. After the tamulosin dosage was doubled and a dietary change on my part, no dairy products, my PSA was nearly normal by April.
I am halfway through my second month of ibrutinib with no complications related to the tamulosin. I have had several episodes of the "musculoskeletal" pain mentioned by many people, mainly hands and knees.
Based on my prostate improvement, I encourage you to research the dietary research recommendations for prostate health, such as omitting dairy. W00dfin
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