Re: Post srt problems-- frustrated

[Guest guest]

Fatigue from radiation theropy can last

6-8 months. Excersise helps to combat it.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Melvin Billik

Sent: Tuesday, June 14, 2011 6:52 PM

To: ProstateCancerSupport

Subject:

Post srt problems-- frustrated

I'm a bit

frustrated:

I went through 38 sessions of SRT, 68.4 GY.

I did experience some issues, but overall got through it ok.

I did have some minor fatigue issues during the last 10 days or so of SRT. But

I got through it without even missing a day of work.

BUT 10 days after the conclusion of SRT I got sick and I am still sick (3 weeks

now).

My main symptoms:

1) Started with a wheezing, spasmic cough. Some days more than others, but not

excessive.

2) Inflammatory feeling/heaviness in bronchial area along with the cough.

3) The previous two have not been a major problem as they seem to come and go,

mostly go. The big problem is this miserable brick wall fatigue. It’s getting

worse and I am having real problems with it.

4) Strange body temperature. It has been consistently 96.8-97.8, generally 97.5

but fluctuating wildly, often changing by 0.8 degrees with 30 minutes. My normal

body temp. is 98.6-99.

I saw the doctor after one week of symptoms but we decided to wait a bit

longer. I saw him today. We did a chest x-ray which is normal (no pneumonia,

which was a slight concern, so that's good). We also did blood tests (mono.,

assorted counts, thyroid, some other stuff) and I’ll get those results in a few

days. We will also do zithromax (an antibiotic). Any ideas? Can this just be

some simple bronchial infection? The fluctuating temps. and fatigue are unlike

anything I’ve had before.

Can SRT fatigue symptoms show up 10 days after completion and if so is it

likely to resolve. Also, is it likely to perhaps show up in the form of weird

blood counts (I am awaiting those results; they may be normal but I sure feel

what I envision to be anemic). Any suggestions? I want to get back in the gym,

but I can barely walk around the block.

Mel

[Guest guest]

Mel, I finished 44 treatments just before New Years. I had many of the issues you’re experiencing—fatigue, sickness—I thought I had the flu, and fever. The sickness lasted a couple weeks with me. I got sick right after New Years and it knocked me out. I’m still experiencing the fatigue, but it is getting better. Hang in, try to get rest and take vitamins. It takes awhile, but you’ll feel better. Good Luck, Dennis Dennis J dennisp42@...Seffner, FL 33584 From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Melvin BillikSent: Tuesday, June 14, 2011 18:52To: ProstateCancerSupport Subject: Post srt problems-- frustrated I'm a bit frustrated: I went through 38 sessions of SRT, 68.4 GY. I did experience some issues, but overall got through it ok. I did have some minor fatigue issues during the last 10 days or so of SRT. But I got through it without even missing a day of work. BUT 10 days after the conclusion of SRT I got sick and I am still sick (3 weeks now). My main symptoms: 1) Started with a wheezing, spasmic cough. Some days more than others, but not excessive. 2) Inflammatory feeling/heaviness in bronchial area along with the cough. 3) The previous two have not been a major problem as they seem to come and go, mostly go. The big problem is this miserable brick wall fatigue. It’s getting worse and I am having real problems with it. 4) Strange body temperature. It has been consistently 96.8-97.8, generally 97.5 but fluctuating wildly, often changing by 0.8 degrees with 30 minutes. My normal body temp. is 98.6-99. I saw the doctor after one week of symptoms but we decided to wait a bit longer. I saw him today. We did a chest x-ray which is normal (no pneumonia, which was a slight concern, so that's good). We also did blood tests (mono., assorted counts, thyroid, some other stuff) and I’ll get those results in a few days. We will also do zithromax (an antibiotic). Any ideas? Can this just be some simple bronchial infection? The fluctuating temps. and fatigue are unlike anything I’ve had before. Can SRT fatigue symptoms show up 10 days after completion and if so is it likely to resolve. Also, is it likely to perhaps show up in the form of weird blood counts (I am awaiting those results; they may be normal but I sure feel what I envision to be anemic). Any suggestions? I want to get back in the gym, but I can barely walk around the block. Mel

[Guest guest]

Mel:

What you are experiencing is not unusual. Radiation knocks hell out of your immune system. (see below - low white blood cells) I would suggest you get a serum count of WBC and Vitamin D. I was so messed up mentally from the Lupron fog after & during IMRT it took me 2 years to determine my post radiation course of action.

My three legged stool of surviving prostate cancer is 1) high vitamin D = 90 ng/ml 2) Exercise = running 60 minutes +/day 3) high testosterone = 1,000+ ng/dl. I throw a few other vitamins in just to be conventional,

What are the side effects of radiation therapy?With radiation therapy, the side effects depend on the treatment dose and the part of the body that is treated. The most common side effects are tiredness, skin reactions (such as a rash or redness, permanent pigmentation, and scarring) in the treated area, and loss of appetite. Radiation therapy can cause inflammation of tissues and organs in and around the body site radiated. This can cause symptoms that depend on what organs are affected and to what degree. For example, radiation can inflame skin to cause a burn or permanent pigmentation. It can also irritate the colon and cause diarrhea. Radiation therapy can also cause a decrease in the number of white blood cells, cells that help protect the body against infection.

Although the side effects of radiation therapy can be unpleasant, they can usually be treated or controlled. It also helps to know that, in most cases, they are not permanent. To a great degree, the possible side effects of radiation therapy depend on the location and the amount of radiation.

H. - Dx 2002 - G=4+3=7 - IMRT

To: ProstateCancerSupport From: dennisp42@...Date: Wed, 15 Jun 2011 13:12:59 -0400Subject: RE: Post srt problems-- frustrated

Mel,

I finished 44 treatments just before New Years. I had many of the issues you’re experiencing—fatigue, sickness—I thought I had the flu, and fever. The sickness lasted a couple weeks with me. I got sick right after New Years and it knocked me out. I’m still experiencing the fatigue, but it is getting better. Hang in, try to get rest and take vitamins. It takes awhile, but you’ll feel better.

Good Luck, Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Melvin BillikSent: Tuesday, June 14, 2011 18:52To: ProstateCancerSupport Subject: Post srt problems-- frustrated

I'm a bit frustrated: I went through 38 sessions of SRT, 68.4 GY. I did experience some issues, but overall got through it ok. I did have some minor fatigue issues during the last 10 days or so of SRT. But I got through it without even missing a day of work. BUT 10 days after the conclusion of SRT I got sick and I am still sick (3 weeks now). My main symptoms: 1) Started with a wheezing, spasmic cough. Some days more than others, but not excessive. 2) Inflammatory feeling/heaviness in bronchial area along with the cough. 3) The previous two have not been a major problem as they seem to come and go, mostly go. The big problem is this miserable brick wall fatigue. It’s getting worse and I am having real problems with it. 4) Strange body temperature. It has been consistently 96.8-97.8, generally 97.5 but fluctuating wildly, often changing by 0.8 degrees with 30 minutes. My normal body temp. is 98.6-99. I saw the doctor after one week of symptoms but we decided to wait a bit longer. I saw him today. We did a chest x-ray which is normal (no pneumonia, which was a slight concern, so that's good). We also did blood tests (mono., assorted counts, thyroid, some other stuff) and I’ll get those results in a few days. We will also do zithromax (an antibiotic). Any ideas? Can this just be some simple bronchial infection? The fluctuating temps. and fatigue are unlike anything I’ve had before. Can SRT fatigue symptoms show up 10 days after completion and if so is it likely to resolve. Also, is it likely to perhaps show up in the form of weird blood counts (I am awaiting those results; they may be normal but I sure feel what I envision to be anemic). Any suggestions? I want to get back in the gym, but I can barely walk around the block. Mel

[Guest guest]

Henry wrote:

....

> My three legged stool of surviving prostate cancer is 1) high

> vitamin D = 90 ng/ml 2) Exercise = running 60 minutes +/day 3)

> high testosterone = 1,000+ ng/dl. I throw a few other

> vitamins in just to be conventional,

....

Henry,

Can you tell us more about your testosterone level? I ask

because this is becoming a controversial issue. Not too long ago

it was treated as axiomatic that high T is bad for prostate

cancer patients. Now there are some oncologists who disagree.

Is that your natural level or are you taking supplementary

injections?

If you are taking supplements, how long after the end of your

radiation and Lupron treatment did you wait, and for how long

have you been taking them?

Have you had any evidence of recurrence of the cancer after your

primary treatment? Are you keeping the high T level in spite of

evidence of a recurrence?

Is there a medical oncologist working with you on this, and has

he or she prescribed this for you or is just going along with it?

Thanks.

Alan

[Guest guest]

: I had a 3 month Lupron shot Aug 2002, IMRT Oct - Dec 2002 - EECP Jan - Apr 2003 started using testosterone supplementation (Androgel) Aug 2004 - present. You are not the first to ask me about testosterone replacement therapy. Here is a copy of one of my replies. Note: My testosterone never came back after the Lupron shot/Radiation exercise (2 years) even now my testosterone drops below 60 if I go six days without supplementation. I do believe low testosterone was the cause of mu Angina attacks (EECP) and present diabetes based on all the Pub-Med articles and medical symposiums I have monitored. It may even have been instrumental in geting PC in the first place. High testosterone has some advantages in quality of life, better sex, better memory, better cognitive powers (I was so dumb during those two years I couldn't even do the bank account) here is that e-mail

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From: henryjcampbell@...xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Subject: RE: [NewDx] Yana upates to May 29, 2011Date: Mon, 30 May 2011 01:05:25 -0400Hi xxxxxxxxx: Since you mentioned my name I guess You might be expecting me to put in my two cents worth. I have been telling my story since January 2004. But remember it's my story and I'm very opinionated. November 2002 (age 68) I had a PSA of 5.5 at my yearly physical examination. My Dr. suggested I see a urologist. My new urologist thought it could be the result of a bacterial infection so he Rx Cipro. (He should have told me the dangers of taking Cipro if you're an athletic - I'm a runner and Cipro can cause you to snap tendons - mile 2 of a 5km turned out to be one of the most painful things I have ever endured-on a par with kidney stones) My PSA went to 5.7 I had a biopsy In June 2000 no sign of cancer. March 2002 a new urologist PSA = 13.22 biopsy = Gleason 4+3=7 Prostate Vol=66cc . I was given a 3 month shot of Lupron. My reaction was not good. I was getting 44 hot flashes a day Quality of Life was VERY BAD !! I became stupid(Lupron Fog) Suicidal,Cranky, Sexless, No Libido and Impotent. forgetful, scared, paranoid and I cried a lot. I had IMRT treatment (Intensity Modulated Radiation Therapy) My Testosterone never came back. Sept 2003 I tried using some testosterone gel The Radiologist got upset, he upset my wife so I gave it up. My youngest daughter(37) was dying of breast cancer and she got my attention !! She only had a few months to live and we were walking together as she told me I wasn't worth anything to anyone the way I was so I had better fix myself. She said: "the medical profession didn't do anything for me and it wont do anything for you - Fuck the Doctors !! and just hope mom understands - go on Testosterone" I feel Lupron wasted a year of my life. My daughter died October 10th 2004. I have been on Testosterone since September 2004. I have targeted my serum testosterone around 2,000 about the same as an 18 year old. Life had became good again. My daughter's strong talk, has given me life these last seven years. I have spent a lot of hours researching this prostate cancer subject and have made a couple of conclusions: The castration game is for making money and the medical INDUSTRY is complicit along the big pharma. Testosterone is not the boogeyman if it were every 18 year would be riddled with cancer. I live in Melbourne Beach ,FL and there is an open lab -no Rx needed just money. I spend about $100 every 4 months to see where my Testosterone, Estradiol.. Vitamin D and PSA are, and track them. I am not afraid of PSA numbers. I have three things that I hope will keep me alive for many more years, Testosterone 2,000, Vitamin D 90 and running. XXXXX if you want to talk (321)727-0289 Henry CAmpbell

To: ProstateCancerSupport From: ameyer2@...Date: Wed, 15 Jun 2011 11:45:18 -0700Subject: Re: Post srt problems-- frustrated

Henry wrote:...> My three legged stool of surviving prostate cancer is 1) high> vitamin D = 90 ng/ml 2) Exercise = running 60 minutes +/day 3)> high testosterone = 1,000+ ng/dl. I throw a few other> vitamins in just to be conventional,...Henry,Can you tell us more about your testosterone level? I askbecause this is becoming a controversial issue. Not too long agoit was treated as axiomatic that high T is bad for prostatecancer patients. Now there are some oncologists who disagree.Is that your natural level or are you taking supplementaryinjections?If you are taking supplements, how long after the end of yourradiation and Lupron treatment did you wait, and for how longhave you been taking them?Have you had any evidence of recurrence of the cancer after yourprimary treatment? Are you keeping the high T level in spite ofevidence of a recurrence?Is there a medical oncologist working with you on this, and has he or she prescribed this for you or is just going along with it?Thanks.Alan

[Guest guest]

Henry wrote:

> You are not the first to ask me about testosterone replacement

> therapy. Here is a copy of one of my replies.

....

Thanks Henry, that was a fascinating account.

It takes a lot of courage to throw off the " expert " advice and do

what your gut tells you has to be done. I admire you for having

done it and am pleased to learn that it has worked out for you.

I take it that your PSA is still low with no evidence of

recurrence.

I believe that there are some medical oncologists who would be

willing to work with you on all this and be more open to what

you've done than the doctor who rejected your approach. However,

if your PSA is still holding low, what you've got seems to be

working okay for you and I'm not sure there's any reason to see

an oncologist unless and until you see a rise in PSA.

As for the original doc who tried to talk you out of all this and

who scared your wife, he may have been trying to exploit you or

he may, incorerctly for sure, have been trying to save your life.

His advice did follow the standard of care at the time. It may

have been wrong but still well intentioned.

I'm glad that this has worked out so well for you.

Alan