Worried. Lymphocytes falling. January 2018 was 0.9, and has been falling every time I test it. Falling a lot more with Chemo. I am going in for chemo #5 tomorrow. Chemo is working and have a falling PSA, (PSA fell from 24 to 6 with excellent pain relief), but I am very concerned about this low Lymphocytes number. It is now down to 0.4. Should be between 1.0 - 4.8 K/MM3.
UC Davis says it is not important. I dont like that opinion. Not important?
Please comment or tell me of treatments you heard of for this?
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abmicro
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There is a serious side effect that can sometimes happen with chemo called "febrile neutropenia." They can give Leukine (Neulasta) to prevent it. Perhaps the cancer is in your bone marrow. Provenge will also amp up your T cells - I think it's a good idea to do Provenge at the same time as chemo or radiation - it prevents neutropenia and the chemo or radiation presents more cancer "debris" for the T cells to target.
Thanks. I will fight to get Leukine. I know that drug will solve a lot of problems and assist remission. I will tell UC Davis that I am at risk for a dangerous "febrile neutropenia" infection. Not easy to get them to do anything. Have to find a doctor who will help me get Leukine. I was able to get it in for the first 7 months of 2009, 250 MCG twice per day (along with other drugs) and it gave my longest cancer remission and PSA drop ever. (I did Provenge in 2012 so I cant get Provenge again.)
City of Hope said NO, no Leukine, UC Davis said NO last year. Medicare will also resist without a good justification. Anybody know a good SCAL doctor who will help me get Leukine? It is more than a paper prescription. Doctor must justify it with medicare. Box of five 500 mcg vials cost about $2000. That is $2000 every 5 days.
My lymphocyte count remains below normal - 0.9, after having chemo almost 3 years ago. I was given neulasta during chemo and later had extensive treatment with Leukine for over a year that was prescribed by Snuffy Myers until I had to stop due to side effects. My local onco is not concerned since my neutrophil counts are at the high end of normal, I attribute this to the Leukine. He says between the chemo and radiation that I had that the bone marrow takes a hit and may never fully recover.
If you are given neulasta I recommend that you also take 24 HR Clariten, they don't know why but it really helps with bone pain caused by neulasta which can get pretty bad. Clariten of course is available over the counter.
In 2007, I was on Leukine for 10 months with the Dr Charles E Meyers (retired) protocol of Leukine, Keto, and Estrodiol patches. I was able to get Leukine because I retired with medical disability from Kaiser and still had 2 years of COBRA employee medical insurance + an amazing Kaiser doctor (also retired) who prescribed the drugs without resisting recommendations on the Myers memo. Over $80,000 worth of Leukine. Had a initial hives skin reaction that was severe, but it went away and I restated the drugs without Clariten. Got my PSA down to zero with one of my longest remissions ever. I had zero infections / viruses for years following. It also cleared a stubborn Bronchitis of of lungs. Absolutely sure I extended my life at least 8 years. Today is 10 years later, and I am sure that my cancer can respond again to Leukine and protect me from infections during this critical time.
Downside of the Leukine is that it disqualified me from any immune therapy clinical trials, but I dont care. I extended my life. I am a 17 year survivor of Gleason 8.
Do you know your absolute neutrophil count? Not the percentage.
According to what I've read: a low lymphocycte count "is a frequent, temporary result from many types of chemotherapy, such as with cytotoxic agents or immunosuppressive drugs." I'm not a doctor, but your lympocyctes are outside the normal range so I see why you would be concerned. You might be at greater risk for infection so I'd keep a sharp eye on your body temperature (less than 100.4) is considered safe.
My experience with chemo suggests that an accurate thermometer is not a luxury when you are doing chemotherapy. I had a slight fever at one point and there was a 3 degree spread between the three different thermometers we have. It's worth the investment to get an accurate thermometer.
Two supplements boost T lymphocytes: beta glucan and inositol hexaphosphate. Read the third edition of Dr. Vaclav Vetvicka's (University of Louisville Medical School, Department of Pathology) "Beta Glucan: Nature's Secret". He spends considerable time explaining how this natural immunomodulator also affects the macrophages, dendritic cells, neutrophils, etc. The yeast-derived Beta 1,3-D Glucan #300 from Transfer Point has consistently outperformed other glucans, including those from Asia extracted from mushrooms and seaweed. Also go to vitawithimmunity.com
and see the interviews of Dr. Vetvicka.
IP6, aka "inositol hexakisphosphate, phytates, phytic acid", is a immunomodulator. Dr. AKM Shamsuddin's book "IP6 and Inositol Hexaphosphate" explains the process. Like beta glucan, IP6 powder can be purchased over the counter. Message me for more detail on either natural supplement and how to take them effectively. I use both.
Abmicro: Here's a different perspective. My lymphocyte count went from low but in range (1.2) to real low (0.5) when several things happened simultaneously: started adjuvent radiation, went vegan, started ADT, and started a number of supplements. Went to a hematologist 2+ years later after had stopped ADT (and lymphocyte count remained at 0.5). He suggested I stop taking anti-inflamatory supplements (e.g., curcumin) for a month. Retested and lymphocyte count doubled (still low though). Went back on anti-inflamatory supplements for a month and lymphocyte count went right back down. Separately found a Dr. Greger video that essentially suggested that the standard range for white blood cells (and so perhaps lymphocytes also?) is flawed because it is based on a population (from western countries I suppose) where most have some chronic inflammation. He referenced a UK study of white blood cell count from African subjects where the median count was much lower. He implied that the issue with white blood cells is not necessarily the count when well, but rather the ability to produce white blood cells when fighting an infection. I've stayed on anti-inflammatories, lymphocyte count has remained very low, but haven't had a noticible infection in several years (knock on wood and not to put the bad mouth on it). Of course I never had chemo so a different issue, but just wanted to throw the above into the discussion.
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