While not focused on solid cancers, like PCa, I post this because it is a very good study that looks at the roles that different parts of the immune system play when challenged by COVID-19. The full report (pre-print PDF available) provides much detailed information for those interested in the science involved, but the The Scientist article gives an excellent summary of the implications for all cancer patients.
Unfortunately, in addition to PCa, I also have a blood cancer, CLL, so the conclusions from this article only confirm the need for those with hematological cancers to get vaccinated and continue to practice good hygiene, social distancing, and wearing of masks.
Go get them shots, Brothers, and Stay Safe - K9
Written by
cujoe
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I read your profile for your husband and it seems he's had a long (good), but complicated treatment history (not so good) with his PCa. I had RALP with poor final biopsy pathology in late fall of 2013, 8 weeks IMRT starting 3 mos after surgery. Undetectable (<0.1) PSA post-surgery/IMRT with BCR at about 3 1/2 years after surgery. Did a single round of 3 mo ADT (Lupon + biacludamide bridge for PSA flash) and have been off treatment for 3 1/2 years and counting with "undetectable" PSA.
Your profile does not mention where you husband is with his CLL diagnosis and/or treatment. My CLL diagnosis was way back in 2006. I have an excellent profile and have remained untreated and unaffected by it since being diagnosed. I have semi-annual appointments at a center of excellence and, other than in-the-toilet immunoglobulins, labs have progressively improved since about 2013 and approach or fluctuate within normal levels across the board. The HU CLLsupport forum is an excellent resource, but as with HU's APC forum, the posts are mostly from newly diagnosed people or those on treatment. I no longer post at APC (you don't want to know why) and infrequently at CLLsupport.
This forum no longer has a sponsor, so npfisherman and I try to keep it going between us. If you have any questions that you think any of the HU forums can help clarify, please do not hesitate to post them there. You can also direct message me, if you would prefer to do that.
Two cancer diagnosis is a true double whammy, but CLL has a full array of current and developing treatments that were only dreamed of back in 2006. The same may well be in the pipeline for PCa.
Let us know if we can help further, and Be Safe and Stay Well,
Cujoe, thank you for this message. NOW I know about you and NPfisherman. I will not forget. I have sat down 3X and tried to amend my husband's profile to include his CLL history and treatment. There is something I'm missing with the HU technology because I've failed to get it done. At the middle of Jan. 2020, my husband had "an unknown virus," pneumonia and systemic staph. All were treated successfully over a period of about 6 weeks, but at the end of treatment for the staph, his infectious diseases specialist referred him to oncology for a possible diagnosis of CLL. Sure enough. We were told he was stage 0, wait and watch, but by June he was going quickly downhill quickly. He has been on monthly IVig since diagnosis for the same gammaglobulenemia problem you have. His FISH test showed 13Q deletion at 33.?% and 11Q deletion at 98.?%. We saw a CLL specialist at Moffitt (non-productive) and then scheduled to see the CLL specialist at Mayo JAX who had been recommended by a member of the FB PCa wives support group that I admin. The specialist (Dr. Asher Chanan-Khan) went on extended medical leave before we could consult, but we were placed with Dr. Sikander Ailawadhi, who we really respect. The recommendation for treatment (when he would need it) was Calquence. Before he could obtain the Calquence and get started, he was hospitalized for double pneumonia - again. Labs revealed that his marrow was too full of cancer to continue solely on Calquence, so he was started on what we hoped would be 1 cycle of bendustamine rituximab. The first infusion did seem to help his labs, so he proceeded to the second. He had a couple of blisters, nothing big, with the first infusion, but a "burned" back and abdomen with the second. Four hours after the first day of the third BR infusion, he started to have a Stevens-Johnson Syndrome reaction to the bendustamine. That SJS reaction resulted in a fourth hospitalization and discontinuance of BR. Since October, he has been on and off Calquence, has just these last 2-3 weeks gone to 1 capsule (100 mg) per day of the recommended 2 capsules. His labs have tanked at most attempts to move toward the full dosage, so here we sit at half dosage for now. Dr. Ailawadhi recommends to have my husband take a break from the Calquence, long enough for his marrow to recover, and try to resume it later (months?) at full dosage. The local oncologist wants to continue on with the half dosage, let the marrow take care of itself. The local oncologist (Florida Cancer Specialists, notorious for shenanigans) swats away the CLL specialist's recommendations. Here we sit, kind of at mercy. My husband's appetite and energy level are returning to normal. He no longer experiences night sweats, now only deals with mild hot flashes for the bicalutamide. I think I included in the profile the fact that he already had mild cognitive impairment before treatment for PCa commenced? That is why bicalutamide + tamoxifen. His last PSA was <0.1. Another is upcoming in late March or early April. I was ecstatic to see your post, not ecstatic to see that you also have both PCa and CLL. You must have seen that I immediately followed you. Husband has his second COVID-19 injection in a couple of hours. He came away from the first with only a rash from belly button to knees, not much of a fever. I am very nervous for today's injection. On a side note, I cannot tell you how much I have relied on the APC group for information and ideas. THANK YOU to you and NPfisherman for the sacrifices you must have made in your own lives to keep this forum going. (Question: what does it take for the forum to have a sponsor?)(My name is) Mary
If you have any ideas, I would be interested in hearing them. Also, take note that the HU platform was started in the UK and was sold last year to a group in the US. I have always harbored some suspicions as to the altruistic vs economic goals for the platform, but it has been a VERY useful tool for me to connect with others and learn/share experiences.
Your husband has seemingly had a rough road with both cancers. That's just not fair. If you have not registered at CLL support (I don't see any signs that you have posted or replied there), I would copy the info you just posted to me there and see what the community response is. (Please break it up into several paragraphs for easier reading.) There are super well-informed patient community there. Unlike APC, it has a 10 admins, all of whom are either CLL patients or spouses of patients. Since I have not had any effects from my low immunoglobulins and may never need treatment, I am not as attentive to specific treatments as I once was. (I'm 13Q double-deletion, IgVHmutated, and near normal ALC and neutrophil counts) Here is a link to the forum and its "About" page. (Go to the bottom to see the list of admins.)
Here is a link to the forum. Get your info out there and I'm sure you will get some solid guidance on what would be a reasonable treatment pathway to consider.
BTW, Please note that most posters at CLLsupport "lock" their posts, so be sure, if you do post there, to do that. Otherwise, you will get much less response (or one of the admins will lock it for you). If you don't know, locking posts restricts them to that particular community and prevents it being accessible to outside search engines.
And, finally, on the COVID vaccine, the anecdotal view is that a side effect response to the vaccine is viewed in a positive light for CLL patients. (due to our indeterminate immunocompromised status.) I had a mild soreness at the injection site (Moderna) for about three days for shot #1. It was about the same reaction I get from the annual flu vaccine. As implied in you reply above, the second vaxx is the one that most often seems to solicit a strong side effect, such as fever, chills, nausea, etc. You didn't mention which vaccine your husband got, but he obvious had a "reaction" to #1 and I can understand your concern over #2. Here's hoping it is not a big one and he gets max possible protection from it. The common line on the vaccine for CLL patients is that while we may not get as much protection as non-immunocompromised people, some protection is definitely better than none.
Have a nice afternoon. Ciao - K9 terror
PS There was recent post at CLLsupport by someone who had both CLL and PCa, and while I had already connected with several CLL/PCa patients, i was somewhat surprised at how many 2 X ers there were on the forum. (With both cancers being more common to older males?) Get registered there and I will find the post and send you the link to it. You may find someone who closely matches your husband's profile there.
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Husband has his second COVID-19 injection in a couple of hours. He came away from the first with only a rash from belly button to knees, not much of a fever. I am very nervous for today's injection. On a side note, I cannot tell you how much I have relied on the APC group for information and ideas. THANK YOU to you and NPfisherman for the sacrifices you must have made in your own lives to keep this forum going. (Question: what does it take for the forum to have a sponsor?)(My name is) Mary
Nitric Oxide -- slows prostate cancer progression and PSA doubling time.
Modified Citrus Pectin
Indomethacin - resenisitize to Enza
