Metastatic prostate cancer

jmcf1949

How long before taste might return after radiation to my neck for C2 PC?

wbcgaruss

Hello jm and welcome to the forum, where of course no one came to because they wanted to. But glad you found us anyway. It has been a long time for me, since 2013, and I didn't write it down so I will just guesstimate it for you. I will say upfront that all the recovery from H&N treatment is a slow process measured in weeks and months. I would say once treatment is done it could be several weeks to a couple of months till taste started coming back, and up to a year or more that changes can keep evolving. If you get a chance give us an idea of your cancer and treatments and the time frame when you first noticed a problem till treatment started. Also where you were treated and any details you wish to share.

Take Care-God Bless-Russ

jmcf1949

Thank you Russ for the kind words.

I was diagnosed with Prostate Cancer in 96 and had a radical prostatectomy in early 97. All was well with PSA’s around 1 until 2021. PSA was 559. My cancer spread and attached to my L5 spine. Had 25 radiation sessions and seemed better. A month later a bad headache showed up. Doctors said the cancer had eaten through my C2 cervical joint. Had that fused last November. No post surgery radiation which is perplexing. Cancer jumped back to my L4 spine. Twenty sessions to clean that up. I’ll see an Oncologist tomorrow and see what he says. I’m quite tired from the radiation and food gags me. Let’s hope better days are ahead. Jim

wbcgaruss

Well, Jim, you have certainly had your share of this evil disease. Sorry, you had all the back trouble and need a bone fused in your back to get it straightened out. I don't know why no post-radiation after surgery but sometimes if there is cancer there and they take it out and feel confident they have clear margins they won't do any follow-up radiation. So this radiation you had is not in the head and neck area, am I correct, and this made food have a bad taste or no taste? Very interesting. My answer to your first post was figuring you probably had the standard H&N cancer treatment. It may not be as long for you to tolerate food. Update us on what your oncologist says. I did not know radiation in another part of the body besides H&N would create a problem with taste and or eating.

Best of Luck Jim.

Take care-God Bless-Russ

jmcf1949

Hi Russ, to clarify they did not do any radiation after my fusion surgery November 27th. My radiation Dr. Did ten sessions on my neck which finished mid March. My saliva has dried up and all food gags me just thinking about it. I’ve also had a very hard time swallowing. I see an Oncologist / hematologist today so I wii see what his view is. This is tough stuff we’re dealing with.

wbcgaruss

OK Jim I think I am understanding this now. The ten sessions on your neck are what caused your problems. That's interesting. I am used to talking to folks on here with H&N cancer and most of us have received the standard treatment of 35 rads and chemo besides. In your case, just 10 sessions have caused some pretty severe problems. Some of this may come back over time, you are not very far out from your radiation treatments completion. You are not a month out from treatment yet. Be patient and some or all of your saliva may come back, and the food tasting bad will slowly back off. As far as swallowing check with the doc when you see him and mention if you maybe should see a speech therapist, they also handle swallowing and any other function in the H&N area. They can give you swallowing exercises to do and sometimes they do a swallowing test to have a video and see what exactly is going on. You are right this is tough stuff and anyone on here can attest to it.

Take care-God Bless-Russ Swallow test below---

https://www.youtube.com/watch?v=dRvYL_TAtKI

jmcf1949

Hi Russ, I have seen a speech therapist who gave me exercises to do but they don’t seem to help. I continue doing them though. Why not? It is nice having this forum where I can learn from those who are more experienced in this stuff. Just have to keep looking forward to better times ahead. I’m seventy-two and will gladly take this on over a child. Thanks Russ, Jim

wbcgaruss

OK, Jim.

Best wishes.

Take care-God Bless-Russ

swimbody

Jim you've had one hell of a journey. Sorry for all you've gone through. I just got finished with 33 radiation treatments and 6 chemo infusions. My veins in both my arms are heavily damaged but will eventually repair themselves.

I didn't chime in to complain. Wanted to let you know that I'm 9 weeks out from my last radiation treatment and my taste has returned to 75%. I'm elated. Spoke with the chief oncologist at my team here in Houston at MD Anderson and they said I was a phenom of healing. I'm 50, quit smoking (socially when drinking only) 14 years ago, got a little obese over the last few years (15 lbs too heavy) which I lost during my treatments and had a positive outlook on life the whole time I was being treated until week 6 when I wanted to finish my life off quietly in the woods with a gun..:(

At week 6 I had MD Anderson put in a nasogastric tube to assist feeding when food became a turnoff. It's a non event, you just swallow the tube while they stuff it through your nose and voila, you can dump 3000cals of great nutritious liquid foods like what I used, Kate Farms organic meal supplements. It kept my weight right at 205 (I'm 6'4") and no matter how much I put in the feed bag, I never gained weight because my body was trying to keep up with the healing it needed to do following radiation.

You really need to address this early on and then, when the time is right, start swallowing again with exercises etc.

jmcf1949

Thanks for the encouragement swimbody. This crap can sure get you down. I’m two weeks out from neck radiation and swallowing is slightly better. One week out from abdominal radiation and still need diapers at night for bowel issues. Food, or the thought of it gags me. Hopefully we both have better days ahead. Take care.

LitlCJdoll

Dear Jim,

Its very understadable that you feel down because you've been assaulted from different angles and your body is saying " No more!'

Did they ever offer a feeding tube? Not a Nasogastric tube, because those will make the swallow more painful. But a PEG, or a Mic Key G tube you could use for a few weeks/ months until you get the appetite back . did anyone bring up this option for you? It would just be temporary and you would get the usable Nutrition that you need to heal. You are losing fluids and nutrients though the bowel troubles, and from just not eating.

I'm 63 pounds today... And I have a G tube. So why does my weight remain so low, even through I have increased my pump rate? Its be cause I have cancer Cachexia, brought on by a new metastatic cancer.

In thinking about your recent treatments , it might be a good idea to see your oncology b dietician to see if a temporary feeding tube could give you a great nutritional boost, while you work on getting your appetite back.

Otherwise, dear Jim, you will have to be admitted to the hospital for " failure to thrive" diagnosis. BE proactive and open up to your doctor, tell them what's going on. Wasting away is no fun. I myself am in Hospice care now.

Let us know what measures are taken next. Don't let it go.

Crystal

jmcf1949

Such a nice reply Crystal, thank you for the kind words. I have discussed a feeding tube with my team but that might be down the road a bit. My saliva was nonexistent a week ago but seems better today, so hopefully, maybe taste isn’t far behind. With great respect, Jim