Hey friends! 11q mutated here. I'm 3 months into my Calquence and just starting thr 2nd week of the Venetoclax. Tiredness and headaches have been my main symptoms. Taking calquence is like taking a Tylenol - uneventful. ( so grateful!) Amidst my lab checks, I've learned they are so much improved! Bulky nodes disappeared day 5 of calquence. WBC is now 7, down from 68 and all labs normal... except my IRON. It has plummeted to a whopping 5 from 41. I am eating ice and raw noodles for daily snacks due to my pica. I'm scheduled for an iron infusion next week. I am not naive to iron infusions. I've had to get them about every 3 years since I was in my 20s. I often wonder if this was my undiscovered CLL eating up my iron. Any thoughts on this theory??
Anyway I am also in my mid 40s and still have awful very regular menstrual cycles. Platelets are 291 so this is certainly not the cause. Has anyone had to deal with this while having CLL? Does your GYN advise hysterectomy or other? My natural female duties and having CLL don't seem to go hand in hand. Just curious!!! I don't mind the guys replying either if you have any insight. thanks!
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KelseyNoelle
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Stress can cause menstrual changes. I had cysts on my ovaries that came & went throughout my life, with painful periods. So the mental as well as physical stressors from starting treatment can cause fluctuations.
In a recent discussion, I had found a link to a publication where there was a link between CLL infiltrated intestines and decreased iron absorption. There is also a recent post about a new, more bioavailable form of iron. I personally can't tolerate basic oral iron salts, and take a chelated form mixed with other micronutrients needed to make RBC's. So I do think it's possible that the CLL could have caused organ problems before showing up in the blood. It's occurred with men investigating prostate problems and getting the CLL diagnosis, as well as another here who recently commented their kidney issues were CLL related.
Thanks I am looking into more natural ways of consuming iron. I take multi vitamins daily but obviously they aren't helping at all. I love nuts and pepita are full of iron
Meat and egg yolk are very bioavailable, non-heme iron from plant sources generally isn't absorbed as well. I only take a supplement if not eating either of those. I try to eat meat 2-3 times a week, 2-4 ounces plus 4 eggs or so weekly. More oriental style, than typical American portions.
I have had extremely heavy periods all my life, including endometriosis. I’ve had about four laparoscopic surgeries to remove endometriosis. I’ve suffered on and off for the last ten years with anemia due to heavy periods. As my periods have gotten more painful in the last few years as my lymph nodes have grown in my abdomen I’ve had a doctor mention hysterectomy, but most others have not. And, I’m afraid of adding another issue to the mix of CLL—the hormonal fallout of a hysterectomy bc I am super sensitive.
I’ve taken a supplement for iron on and off for years too, but have never been able to be consistent due to side effects. I have noticed that as my anemia gets worse my body starts craving iron rich foods, especially meat. So it isn’t unusual for me to eat/crave red meat four times a week leading up to my period. That usually helps,
I am interested to understand how treatment does with female hormones—-I keep asking my doc, but am told they do not have data for it.
Oh I am 50 and my periods have been like clockwork. I had to push back my beginning of treatment with venetoclax due to an Epstein Barr reactivatuon that has caused me to have full blown mononucleosis, but will likely start in August.
Have you or anyone noticed changes in your cycle due to treatment? And if so, what treatment have you had?
I am using a topical bio identical hormone replacement therapy using natural hormones. There are intravaginal dosage forms also, if the main symptoms is related to that area only. Bio identicals using naturals seem to not carry the same cancer risk of synthetics, it appears to be less. There is a limited amount of data for this, more studies are needed. And the data supports mixed hormones having less risk than plain estrogen.
I was diagnosed early, age 51, and wasn't in menopause. The stress of the diagnosis on top of my extremely stressful year prior to the CLL activating, had me coming out the other side in menopause. I didn't get a Pap/pelvic the first few years after diagnosis, I was dealing with the CLL. After getting into a remission, the next exam had the doc telling me my tissue looked full blown menopausal. I started the BHRT to deal with skin and vaginal tissue problems that had developed. I take a very low dose, and it seems to help. I stopped briefly when taking ibrutinib, I had so many side effects that getting the testing/seeing the specially trained doc to safely use BHRT fell by the wayside. After things settled down, I started again and have fewer skin problems. My skin is noticeably thinner without BHRT and it tears/cuts/scratches less while I am on it. My MRSA and major shingles occurred while *not* on BHRT. So I do the monitoring to stay on it.
Thanks Sofia. From what I've read high levels of estrogen are definitely not helpful with CLL control. My Dr tries to avoid the discussion of hysterectomy with me due to my age and the increased risk of bone loss. I may ask for an IUD with little hormone.
Please consider natural hormone BHRT instead of an IUD containing synthetics. Synthetic progesterone appears to be more of a cancer driver than estrogen. Both of them together have the most risk, check out the links I put earlier. We can PM to discuss how to find a good BHRT provider if you like. It's not a "CLL discussion" so IDK if it would be appropriate to have here.
I am prejudiced against IUD's having "something" in them, my mom got cervical carcinoma within a few years of getting one. With a CLL diagnosis, I think a non-hormonal IUD would be warranted. Pregnancy prevention separately, and if you need hormonal adjustment to deal with the other issues do *that*, instead of trying for a twofer. Especially with synthetic hormones. Classes I have taken, recommend natural hormones whenever possible. So I take Armour thyroid, not a synthetic single thyroid chemical. I use a natural BHRT, not synthetic. I take adrenal gland supplement of ground up gland, not a chemical.
My doctor also dis not like the option of even a partial hysterectomy. I want one but now I'm not as quick to make that decision because literature varies on how sex hormones may affect CLL. She did recommend an IUD. That'd prevent pregnancy too. When I got pregnant last year it sent my CLL crazy. My body definitely did not like that. So I want to avoid that too.
This will be my first cycle coming on the V. Only thing I noticed since beginning treatment with acalbrutinib was much heavier periods. But platelets normal.
I cannot constructively comment on your female issues (I have my own prostate issues, LOL), but I can tell you that obinutuzumab and Venclexta are amazing drugs. My doc told me that recent data coming in show that CLL patients are increasingly going many years in remission (will not use the word 'cure') after completing their treatment regimen, and even more new and effective treatments are on the way. I completed my treatment on March 1st and had my 3 month evaluation last week....excellent results, although my blood numbers are a little on the low side.
That's awesome Dan. Understandable not being able to comment on the monthly gift from mother nature. LolHow long were you on Venetoclax? My Dr is saying I'll be on about 12-18 months
I am at CLL for 17 years and found out I had very low iron when I first got CLL and they checked it, taking iron 2 to 3 times a day for for several years and I still take it sometimes now my iron is still low it's at least on the chart now where is it wasn't before. my saturation is only 18%. My mother also had cll and I remember her saying that when she was a kid that she had anemia, and I have often wondered that too. does low iron have something to do with CLL?
I think this is my next area of research concerning CLL. It is a detriment to the body if the oxygen doesn't have a carrier to feed the cells and promote proper function.
I know these are just things that regular doctors don't ever check on people, unless you directly ask for it when I was in the hospital once they said my B12 was very low and they gave me some shots for that and also when I first went to the cancer center, my D was very low it wasn't on the chart even either, and that's another supplement I take every day and have for years and my vitamin D though on the chart now just never budges any higher. probably been like that for many years. I don't think modern medicine takes into account many vitamins and the deficiencies that we can have And how they affect our health. No research money in it.
You're absolutely right. I had to see a pulmonologist years ago when I had a terrible lung infection. Likely the first signs of CLL not knowing something was wrong. Anyway he said I had almost no vitamin D in my blood and that could lead to auto immune disorders or was commonly found in folks with auto immune deficiencies.
Perimenopause causes awful heavy menstruation. I wish I had a hysterectomy instead of trying to work while enduring the pain and discomfort, my sweats started then and due to my cll never went away. Extreme back pain, cramps and pelvic pain was nearly intolerable. If you are young enough, consider hormone replacement.
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blood work info and possible spleen removal 
Has anyone had Increased Anxiety while taking Calquence?
Iron Levels with CLL
tumor necrosis 
