Recently diagnosed with Gleason score of 9

SV

VascodaGama said:

Chemical castration

T=9ng/dL means you are in chemical castration. Congratulations.

It also means that the cancer is hormone dependent which could represent a long period of control on the advancement of the disease. Surely you have plenty of time to research on the details of the treatments and chose the one giving you the highest confidence.

You are an experienced adventure and you may take this as another of your journeys.

Best wishes.

VG  

Thanks amigo. Any opinions on

Thanks amigo. Any opinions on Proton?

VascodaGama

My lay opinion on your inquire

Amigo SV (G)

I read the results of your genetic test and was surprised for the simplicity used in reporting the findings. I was expecting that genetic tests today would be more specific and with more definite answers to prediction, treatment failure and hereditary consequences. I wonder if all genetic laboratories report the same or if this simplicity pertains only to the gene PIK3CA found and described in your biochemistry report. They have tested 324 genes and the introns of 36 genes (segments of a DNA) but little is mention in regards to prostate cancer and I wonder why they used your gland specimen to check consequences in breast and other cancers. One could think that they have not elaborate much about prostate cancer because they did not detect the genes that identify worse cases of PCa.

I hope your medical oncologist (in May’s visit) gives you more details and describes the benefits not listed in this report, In my lay opinion the worse in the report regarding the PIK3CA gene is for the low benefit you would get from chemotherapy, in case you become in need of that in the future. It seems that this gene works as a switch in cells providing these the capability in duplication (spreading) and survival. This is probably the gene targeted in Monoclonal Antibody Therapies (mabs) which has become the choice treatment for cancer since the works done by the Nobel laureates for medicine of 2018 (Dr. James P. Allison and Dr. Tasuku Honjo) for their discoveries that have led to new medicines that activate the immune system to eliminate such survival switch in cells. This is regarded as the reason behind recurrences occurring in chemo and radiation treatments. In fact they describe in the report that this gene is associated to: “… Prostate Adenocarcinoma TCGA dataset showed a significant association between PIK3CA alteration, including amplification, with decreased survival (HR=0.55), increased regional lymph node metastasis, higher primary tumor category, and higher Gleason grade  …”

In regards to your above request on proton, I just want to say that I cannot substitute you in deciding on the type of radiation and modality. In your shoes I would chose the one that gives me more confidence and peace of mind.

My SRT experience was with IMRT but it seems that the side effects and risks are equal in both Photons and Protons. The big difference is in the capability that proton treatment has in delivering high energy (Grays) to a a predefined spot (named Bragg peak) as it manages to decelerate faster than photons. The result will be a higher intensity at the entrance of the rays in our body with zero effects in tissues standing after the peak. It can be done in a lower number of sections that IMRT to reach the same level of absorbed grays. I recommend you to inquire a radiotherapist on the matter. You may also inquire if proton becomes better in guys that have such PIK3CA gene known to be influential in the outcome of RT.

May I suggest you to copy and paste the genetic report in here to get the opinion from those that did the same test.

Best wishes.

VGama

 

SV

Starting Proton tomorrow

I finally pulled the trigger last week deciding on Proton at California Protons in San Diego, California--which is only an hour drive from my house. I asked my RO at MDA point blank that if unable to move to Houston for treatment who would he recommend? Knowing of the above listed location possibilties he immediately recommended Dr Rossi at CP.

I went in last week for a form fitting of my hips so they can target the same area without error. Rossi said 35 treatments but no more Lupton or Casodex. Whew!

Any advice or info on Proton?

VascodaGama

Fatigue and just

I'm glad to know that you started the treatment. I believe that they will radiate the prostate bed and probably include some lymph nodes. The total grays delivered may not be very large due to the location as it will affect the colon. You should be ready for the symptoms usually involving short of diharea. In my case it took three months to recover.

Hopefully the treatment will free you from the bandit. Without ADT your testosterone will recover in about  4 months to normal levels. You can then verify the success.

Best.

VG

VascodaGama

Fatigue and loose bowel are typical effects in SRT

I'm glad to know that you started the treatment. I believe that they will radiate the prostate bed and probably include some lymph nodes. The total grays delivered may not be very large due to the location as it will affect the colon. You should be ready for the symptoms usually involving short of diarrhea. In my case it took three months to recover.

Hopefully the treatment will free you from the bandit. Without ADT your testosterone will recover in about  4 months to normal levels. You can then verify the success.

Best.

VG

SV

VascodaGama said:

Fatigue and loose bowel are typical effects in SRT

I'm glad to know that you started the treatment. I believe that they will radiate the prostate bed and probably include some lymph nodes. The total grays delivered may not be very large due to the location as it will affect the colon. You should be ready for the symptoms usually involving short of diarrhea. In my case it took three months to recover.

Hopefully the treatment will free you from the bandit. Without ADT your testosterone will recover in about  4 months to normal levels. You can then verify the success.

Best.

VG

Another nasty detail

Doctor also said that with Proton they stick a balloon up my rectum every treatment to protect it from the radiation. Is this common?

VascodaGama

Stop movement of organs

Procedure done with the balloon have the intent to stop (fixed)  the movement of the colon and at the same time avoid damage to the opposite/rear wall  of the colon. The area (wall) of the colon where the prostate gland used to be will be radiated.

Some radioterapists in prime RT use a sort of gel injected at the thin  local tissue that is known to protect the colon for some extent.

You can inquire if they do that in SRT procedures.

Best.

VG

eonore

SV said:

Another nasty detail

Doctor also said that with Proton they stick a balloon up my rectum every treatment to protect it from the radiation. Is this common?

Balloons

Just think, up until now we thought balloons were for kids' birthday parties.

Eric

SV

Upset bowels--HELP

The first two weeks of Proton therapy have gone well with no apparent side effects until the last four days I've had a combination of horrible gas and acute diarreah. I've been sprinting to the bathroom a dozen times a day with frequent accidents.

Any solutions?

VascodaGama

Try soluble fiber diets

Amigo SV,

Many guys in this forum have chosen lesser fiber diets to recover from upset bowels due to RT. However, in my case I involved diets based on soluble fiber. For instance; Black beans,  Brussels sprouts, sweet potatoes, avocados and fruits like oranges, apricots, etc. I considered my breakfast has the main meal which was a mixture composed of 100% bran (Nabisco) plus oats, dried figs, almonds and a variety of seeds, together in a bowl with unsweetened natural yogurt. A cup of strong coffee with low-fat milk.

Surely I experienced diarrhea (soft stool) but it was controllable. Your doctor can recommend you medication if changing diets doesn't improve the issue.

Best,

VG 

SV

VascodaGama said:

Try soluble fiber diets

Amigo SV,

Many guys in this forum have chosen lesser fiber diets to recover from upset bowels due to RT. However, in my case I involved diets based on soluble fiber. For instance; Black beans,  Brussels sprouts, sweet potatoes, avocados and fruits like oranges, apricots, etc. I considered my breakfast has the main meal which was a mixture composed of 100% bran (Nabisco) plus oats, dried figs, almonds and a variety of seeds, together in a bowl with unsweetened natural yogurt. A cup of strong coffee with low-fat milk.

Surely I experienced diarrhea (soft stool) but it was controllable. Your doctor can recommend you medication if changing diets doesn't improve the issue.

Best,

VG 

Diet stuff

Thanks amigo. I followed all of your dietary advice except for the Brussel Sprouts. Yuk. So far finished 21 Proton treatments out of 35 and feel pretty good because of the continuous exercise and spectacular environment here in the mountains. Okay...well maybe a little fatigue.

I've decided that I won't do any more Lupron shots or Casodex when those pills run out in mid-July. I was tenatively scheduled for another 90-day Lupron shot July 14 but since half of the doctors consulted said the first two 90-day Lupron shots should be enough I will follow their advice...instead of the advice of doctors who advised -2 years total.

VascodaGama

RT damage to living PCa cells last during its life cycle period

I agree with your decision. In SRT most of the urologists request two years on ADT for Gleason 9 guys but medical oncologists recommends 6 to 12 months only. We have discussed this in previous posts above. The aim of ADT is to sensitize PCa cells to increase the benefits of the RT. Cells die while on their life cycle so that after RT the beneficiary period would last to a maximum of 4 months. After that the effect of the RT in PCa cells is nil. Continuing ADT would just mask the living cells. PCa would become dormant for a period until refractory but it wouldn't kill the bandit.

Best,

VG 

SV

Lighten up on excercise during radiation treatment?

I have felt some fatigue recently and the doctor said that was my body struggling hard to recover from the daily radiation treatments. This made me wonder if given that I have almost zero testosterone to expedite normal cell reproduction, should I temporarily train at half intensity? Wouldn't it be better to focus the bodies healing energies on good cells that were just radiated?

Georges Calvez

Walks

Hi there,

I used to take walks of several kilometres a day when I was having radiation. I was on two high protein meals a day as well. This seems to be a French peculiarity. I was supposed not to eat things that would tend to result in intestinal gas or soft stools as well.
If you start to feel tired then do less exercise.

Best wishes,

Georges

Max Former Hodgkins Stage 3

SV said:

Lighten up on excercise during radiation treatment?

I have felt some fatigue recently and the doctor said that was my body struggling hard to recover from the daily radiation treatments. This made me wonder if given that I have almost zero testosterone to expedite normal cell reproduction, should I temporarily train at half intensity? Wouldn't it be better to focus the bodies healing energies on good cells that were just radiated?

Focus

SV,

I'm sure everyone accepts the importance of good attitude, but I would question to what extent someone can "focus the body's energies," one way or another.   Radiation causes fatigue, sickness (cancer) causes fatigue, low T causes fatigue, and age causes fatigue.  Add all together, and you've got a pretty strong receipt for serious fatigue.    

I'd actually just rest.  When I had advanced lymphoma years ago, the six months of chemo had me often sleeping 14 or more hours a day, some days as many as 17 hours.   It was a natural effect.   Wait till after RT ends to train for the Summer Games is my suggestion.

 

Josephg

Exercise or Rest

I was profoundly tired, a few weeks into my radiation and hormone treatments.  However, I went out of my way not to allow my tiredness to interfere with my normal daily routines.  My daily routine did include exercise on a treadmill.  I did not push myself beyond a safe level of exercise, but I did fight the urge to say, 'I'm tired', and stop or dramatically reduce my activities.

Each person must find and choose their own path in these areas.

SV

Free at last!

Thanks for the info guys. Yesterday was the last of 35 Proton radiation treatments...whew! It was a strange feeling walking out of the center for hopefully the last time. For the last two months my gal and I had focussed our lives around making to those 35 appointments and of course that dreaded balloon.

When asking the Doc about recurrence he frankly stated 40% likely to return for most men. But given my good health, physical fitness, diet, yoga, excercise and environment in this cedar forest I could expect a better outcome. My supply of Casodex runs out next week and I've opted to forego anymore Lupron. (did a total of six months)

Now we wait for the PSA test in two months...

What do you guys think?

Georges Calvez

Looks good

Hi there,

Yes, it looks good. You just have to wait and see.
The 40% covers a lot of cases from the quite risky to the pretty safe.
You just have to look at it as an adventure, I do.
Remember no one here gets out alive.

Best wishes,

Georges

VascodaGama

Alive and Kicking

Congratulations. Time for the drink you like best.

You can start checking the PSA in two months but it will be more reliable in four months when the effects of the hormonal component wear off. The decline nadir from that point on, if any, should be reached at about one year post the end of the last RT section.

Wishing your next announcement of remission.

Best,

VG   

SV

Increasing side effects

The end of my second 90-day Lupron shot is July 14 so I was expecting the minimal side effects I've encountered so far too subside. However the joint pain has increased substantially along with the sporadic disorientation. How does the Lupron shot work? Is it time released so that it is full strength up to the last day?