Cancer immunotherapy

[Lagovista2018]

My husband almost done with his chemo treatment (two more rounds) his oncologist both local and at MD Anderson want to start him on Immunotherapy after chemo therapy. Has anyone have or is on any immunotherapy how helpful is it? Also they want to do some light radiation on his brain as a preventative since the prostate cancer that he has can go to the brain both his oncologist said it may cause some cog cognitive effects. We’re both very happy with the next set of treatment after he’s done with chemo but we’re both still new to this any advice would be great

[RalphieJr64]

Can you tell us a little more about your husband. PSA, Gleason, Metastasis, also when was he diagnosed? Age? Light radiation on his brain sounds odd. Has it metastasized there?

[Lagovista2018 in reply to RalphieJr64]

He’s 45, metastasized to bones in lower back, PSA is 8.5 Gleason was 4+5 well no cancer has is in his brain. Dr. Corn at MD Anderson suggested the radiation on the prostate as well as the brain it’s called prophylactic cranial irradiation. Dr Corn said the idea is to treat it first because the cancer can develop in his brain. But not Mets to the brain

[Lagovista2018]

It’s called prophylactic cranial irradiation

[YostConner]

I’m no doctor, but I’ve never heard of prophylactic radiation of the brain for PCa. The brain is not a typical site of PCa metastasis. I have mets in my skull, and we haven’t even radiated those. Is the proposed immunotherapy Provenge?

[Lagovista2018 in reply to YostConner]

I’m not sure we just found this out. We’re going to have a meeting with Dr. Corn as well as my husband oncologist here in town to ask more questions about this. I’m not sure if it’s part of the immunotherapy. I know it’s a preventative the one thing Dr. Corn did say was that my husband type of prostate cancer can go to the brain that is why they want to do the prophylactic cranial irradiation

[YostConner in reply to Lagovista2018]

Thank you. I found an article that discusses prophylactic cranial irradiation in connection with small cell prostate cancer. That’s a rare form (which lines up with what you say about your husband’s diagnosis and age). I hope you’ll report back to us after Monday so we can all learn.

Two things I’ve learned during my journey are to have someone else with me at appointments to catch what I miss and to take written questions with me. The best docs wont let you walk out without understanding the answers to your questions. Best to you both.

[Hirsch in reply to Lagovista2018]

I would seek another opinion. Perhaps the ro has received some second hand radiation

[Tall_Allen]

If anyone has seen some weird kinds of cancer, it is MD Anderson. What kind of prostate cancer goes to the brain - did he say? Is the immunotherapy Provenge or something they are testing in a clinical trial?

[Lagovista2018 in reply to Tall_Allen]

The immunotherapy no. The prophylactic cranial irradiation. I’m not sure and I’m very on the fence about it. Not sure if we will go this route. Especially the cognitive effects it has

[Tall_Allen in reply to Lagovista2018]

What is the dose to the brain?

[Lagovista2018 in reply to Tall_Allen]

Not sure we just found out the other day and we’ve been talking about it. Dr. Corn suggested it as a possibility as a preventative. Dr Corn and my husband local oncologist Dr. Bucheit have discussed it they first want to use radiation on the prostate along with the immunotherapy. So we’re doing research and when my husband goes in for his next chemo treatment on the 25th we’re going to ask about the prophylactic cranial irradiation

[TNCanuck]

I have no answers for you, but send continued prayers.

[Rod98168]

Sounds like you have doctors who are trying to keep on top of this before it gets out of control. I had started with provenge last week but had to stop while I was doing the leukapheresis at Red Cross because I went into anaphylactic shock from the citrate they were circulating too quickly through the IV. Now I have terrible rashes at both IV sites on both arms. If you do the provenge immunotherapy my advice would be to tell them to do the process as slow as possible because I was fine until the 3rd hour, then I suddenly went into anaphylactic shock which is a horrible experience. The nurse increased the speed of the blood draw pump because we were running out of time and the delivery pickup was going to be arriving soon. I think if the nurse had kept it running at a slower pace I might have been okay. Needless to say that experience was enough for me to end the immunotherapy. Also, the transfusion with the provenge is dangerous, as they actually Infuse two antihistamines into you while they're putting the Provenge into you, which tells me they are having problems with allergic reactions. Hope it goes better with you.

[HopingForTheBest1 in reply to Rod98168]

Thanks for your info about Provenge. Very useful for me as I just had my first leukopheresis two days ago, which went well. Having Provenge infusion tomorrow, Friday 3/15. Will be on the lookout and ask about the antihistamines. Was told that it is "generally" well tolerated.

[Hirsch in reply to Rod98168]

Do no harm? Sorry for your experience

[Metungboy]

All sounds unconventional.

If he has brain metastases then brain radiotherapy has SOME validity.

I think "just in case treatments" are logically fraught.

Immunotherapy has limited evidence of efficacy in standard adenocarcinoma of the prostate.

If he has one of the weirder cell types then maybe.

Rays to the brain cause damage to the brain as is apparent by the comment about cognitive loss.

Unless there is evidence I have never heard of I would ask a lot of questions.

I have lots of mets including in my skull but I am not contemplating rays and I have had no suggestion that it even might be a good idea.

[Lagovista2018 in reply to Metungboy]

Thank you. That is what we’re going to to do. When we see his oncologist on the 25th I have so many questions when it comes to this because he has no Mets in the brain

[DeanNelson]

My Doctor is Dr. Corn, he is one of the best in the world IMO, I am goin to see him on the 29th, as they think mine PCa has morphed into small cell neuroendocrone

[Lagovista2018 in reply to DeanNelson]

Yes he is we love Dr. Corn we just want to get some more information on the cranial irradiation on the brain because it may cause some cognitive effects

[DeanNelson in reply to Lagovista2018]

I completely understand... I will pray for you both and light a candle today

[Survivor1965]

There are so many smart people here I usually find I have nothing to add to people’s questions. I can only offer well wishes and prayers to you and your husband. I was diagnosed at 46 Gleason 9 so I know how hard this is. But I’m now 53 so stay strong and write down all your questions and the answers. Sounds like you have a good doc but I don’t recall anyone getting preemptive cranial radiation. I had mets to my skull and still radiation never came up.

Good luck, Johnny

[Lagovista2018 in reply to Survivor1965]

Really..that’s great. We have been some strong and optimistic through this whole process and so far we have gotten some really great news when it comes to my husbands treatments. My handsome husband will be 46 in a couple of weeks.

[Dd7757]

An Article on point. sciencedirect.com/science/a...

[Lagovista2018 in reply to Dd7757]

My husband was dx last November with advanced prostate cancer 4+5 Gleason with neuroendocrine differentiation cells not SCCP. He has been responding very well to his treatments he’s on carboplatin and etoposide along with taking casodex hormone pill daily and Trelstar hormone injection every six months. Since my husband is almost done with his chemo treatment His oncologist were thinking of future treatments for sure radiation on the prostate and some immunotherapy and a possibility of prophylactic cranial irradiation on his brain to get ahead of the cancer from possible spreading to his brown because it may. My worry is it may cause cognitive issues. My husband and I are going to weigh all our options we trust both his oncologist here in San Antonio and Dr. Corn in Houston

[Currumpaw in reply to Lagovista2018]

Radiation is a known carcinogen. What I have read is that chemo kills cancer cells but not cancer stem cells. Cancer stem cells have the ability to cross the blood brain barrier, as does intravenous vitamin C.

An ex-wife who is a cancer nurse has told me that it isn't unusual for someone that has had chemo to be clear after treatment and then be diagnosed with brain cancer. A neighbor who had lung cancer and had platinum chemo was declared to be cancer free at his first checkup after treatment. After his second checkup he was told he had brain cancer.

Lagovista2018, your explanation was exactly why I expected that this is done. I have my opinions and thoughts, such as, when a baby is born, why not irradiate the entire baby to protect it from cancer during it's lifetime. Yes, I am being facetious. Pass the salt. When I was first diagnosed I was given options for treatment one being radiation. My uro at that time stated that because of my age, 62, my health and physical stats that he wouldn't advise radiation because it could lead not only to urinary incontinence, fecal incontinence but also cause future cancers.

I do know a woman that after chemo had brain cancer. She had radiation after being diagnosed. She told me that during treatment there a flash, maybe a couple more--she hasn't needed many treatments and is having intravenous vitamin C infusions.

My friend and I meet when we have vitamin C infusions. Did you know that for decades I believe, the Japanese have been prescribing PSK for cancer patients on chemo? The Japanese did studies that you should be able to access. PSK is nothing other than Turkey Tail mushroom which strengthens the patient's immune system. I take Host Defense Turkey Tail as well as their My Community for synergy.

You and your husband have a decision to make. I wish you the best.

[Magnus1964]

Never heard of radiation to the brain. I would question that. As to immunotherapy, I had Provenge and did quite well on it.

[Lagovista2018 in reply to Magnus1964]

That’s what I keep hearing. Since my husbands diagnosis we have never heard of radiation on his brain as a preventative. On his prostate yes but never the brain. I’ve done research on immunotherapy and heard positive things. Besides my husband has not had any brain scans nor any requests because he has no Mets on his brain

[Magnus1964 in reply to Lagovista2018]

I would question his doctor on this.

[Moose2012]

My husband has Prostrate Cancer, Stage 4, and we also are going to MD Anderson in Houston. He is 55, was diagnosed in 2016. He had radiation treatments to remove the cancer that metastasized to his lower back. We have never been given a Gleason score? MD Anderson wanted to do a PET Scan but our insurance said no. We are going back to MD Anderson April 9th for a Full Body MRI as his PSA is increasing, currently at 9.1. We have been told all his other blood work is great and he continues to work. Going to MD Anderson was the best thing we did, our local Oncologist gave him 2 to 4 years and wanted to start him on Chemo the day we met him and said that was the Protocol the Insurance Company went by. I will be following your posts and wish you the very best.

[j-o-h-n]

This may be the answer. As I've posted before I'm being treated for my Melanoma Lung Cancer with the immunotherapy drug Keytruda. It's working. My oncologist has me scheduled for a separate "brain scan" as well as a full body pet scan in June. Is the immunotherapy and a brain scan related? I'll find out and post here.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/14/2019 7:51 PM DST

[MJStar]

I have gone through all the current therapies available for Metastatic Castration-Resistant Prostate Cancer. Unfortunately, my cancer continues its progression. My oncologist recommended I try an immunotherapy called KEYTRUDA® (pembrolizumab). In the beginning, I had good success with Keytruda; my PSA begin to lower after the first treatment, it went from 115 to 46. My PSA continued to drop over the next for three months going down to a low of 25.5, then I started having some serious side effects. My first setback was lung problems (Pneumonitis) and pneumonia. I immediately stopped Keytruda and was put on high doses of antibiotics and steroids. I recovered after a week in the hospital. A few weeks later I started having serious problems with diarrhea. After numerous tests it was determined this was another autoimmune disease caused by Keytruda. I now have Celiac Disease & Colitis. I’m hoping it’s not permanent.

This reply is not meant to scare anyone on Keytruda or keep someone from trying immunotherapy it is informative only. While on any treatment you need to be vigilant; research all recommended therapies and listen to your body and notify your doctor with any new side effects during your journey. Everyone reacts different to cancer treatments and therapies.

I’m still searching for new ways to treat my disease. I recently had a biopsy sent out for genomic testing to see if I qualify for a new study at my local cancer center.

I believe the key is to stay positive and try to keep as active as possible. Good luck with your journey.

[Lagovista2018 in reply to MJStar]

MJStar of all the luck on Keytruda. I hope things turn around and you get better. Did you get Celiac Disease and Colitis on Keytruda?

[MJStar]

Yes, celiac and colitis was caused by Keytruda. It was an autoimmune reaction caused by Keytruda. Basically my body started attacking my lungs and GI track. Both have very small percentage of getting this reaction yet I got both.

It is a setback but as always, I look at the bright side and try not to look back.... Everyday is a blessing to me; if it wasn't for the numerous medications I have taken I would not be enjoying the extended time with my family and friends.

[cabin]

Be sure to ask lots of questions, but you r in good hands at MD Anderson, I have been going there for 7 years and they r the best . I'm 69 and stage 4 with 10 metastases in ribs and spine, but have had some success with zytiga, but provenge just did not work for me. Zytiga brought my psa from 64 to 6 in 5 months. God Bless.

[Lagovista2018 in reply to cabin]

Thank you

[Lagovista2018]

My husband started his 5th round of chemo yesterday (only one more round to go) and we were able to talk to his oncologist who has been consulting with Dr Corn at MD Anderson and the next step is to radiate his prostate as well as starting him on Keytruda immunotherapy. We also asked about the prophylactic cranial irradiation which my husband and I were on the fence about because it can cause cognitive issues. She said that it was up to us there is a 70% chance that it can go to the brain she said that if it does radiation works well into shrinking it significantly and they are going to give my husband CT scans every two months to monitor him they will only radiate the brain if he has Mets in the brain Hearing this made my husband and I feel better.