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Looking for information about side effects from ADT and Radiation

Looking for information about side effects from ADT and Radiation

Posted by Daylilylady on Aug 25, 2019 7:37 am

I am the spouse of a husband with recently diagnosed prostate cancer. It was labelled as aggressive with a Gleason Score of 9 and PSA 16.  A course of 38 sessions of Radiation and 18 months of ADT was determined to be the best treatment option. As we embark on this journey we are both very frightened about the side effects. Any thoughts on how to get though this and what to expect would be most welcome.

Re: Looking for information about side effects from ADT and Radiation

Posted by Elizabeth06 on Aug 25, 2019 7:58 am

Hello Daylilylady‍ 
Welcome to Cancerconnections.  Sorry to hear about your husbands diagnosis.
under specific cancers, there is a section for prostate cancer and many discussions that might interest you and provide insight.  There is also a section for caregivers that you might find helpful.
WesT‍ , Jackwb‍ , are two of the members actively participating in the prostate cancer group, who might be able to address your concerns.
This is a great place to connect with others and gain insight from their experience.  It is also a safe place to vent.
hope the connections you make help to reduce your fears.

Re: Looking for information about side effects from ADT and Radiation

Posted by Lianne_adminCCS on Aug 26, 2019 1:02 pm

Daylilylady‍ 

Welcome. As Elizabeth06‍  has mentioned, we have a prostate specific group so I have moved this post there.

Besides WesT‍ and Jackwb‍ , MrFido‍  may have some perspective to share and I believe edap‍ has some experience with ADT and will hopefully jump in.

Glad you have reached out here

Lianne

Re: Looking for information about side effects from ADT and Radiation

Posted by edap on Aug 26, 2019 4:25 pm

Hi Daylilylady‍ 

I just started ADT last month in Barrie, Ontario and since my disease has spread to my bones and lymph nodes, my urologist said that the treatment would be life-long. In your husband’s case, it is short-term ADT (from six months up to three years). Short-term or intermittent treatment is often recommended for patients with cancer confined to the prostate gland who will receive radio therapy as the primary treatment. When l went for my first Lupron injection, the nurse gave me a copy of the following book which tries to answer any and all questions that one would have regarding the therapy. I would strongly urge you to obtain a copy.

[BOOK] Androgen deprivation therapyan essential guide for prostate cancer patients and their loved ones

RJ Wassersug, L Walker, JW Robinson - 2014 - books.google.com
" This is an excellent resource for individuals who are both being treated by and caring for those on androgen deprivation therapy. It addresses commonly understood as well as sensitive topics impacted by this treatment and offers explanations and strategies for how to … “

Ed

 

Re: Looking for information about side effects from ADT and Radiation

Posted by WesT on Aug 26, 2019 7:57 pm

Daylilylady‍ Sorry to hear of your husbands diagnosis.  It does come as a shock and generates a lot of concern.

As Elizabeth06‍ and Lianne_adminCCS‍ led to, I have had some experience with prostate cancer.  I have to admit that I went the surgery direction given I was diagnosed with stage 2 and Gleason of 7.  My age played a factor in the decision as well, 54.  Although I read about radiation and hormone therapy when considering my options, I have really no experience directly with either.

A Gleason score of 9 is high and you did not mention results of other scans they would have likely done in reaching the treatment path decision.  There would have likely been a bone scan, potentially a CT scan.  I had both although the CT scan was more towards the detection of the large kidney stone that started my path to realizing I had cancer.

There a number of threads here with different people talking about their treatments and why those options were chosen.  Most recently there was this topic about radiation, https://cancerconnection.ca/discussions/viewtopic/73/63352 started by Reza‍ .  Maybe if he drops by he can provide more of his insight.

Good luck with his treatment and keep us informed of his progress.

Re: Looking for information about side effects from ADT and Radiation

Posted by Charles on Aug 27, 2019 1:20 am

Get Wassersug's book (above) and check out

LifeOnADT.com

 

Re: Looking for information about side effects from ADT and Radiation

Posted by Reza on Aug 27, 2019 12:03 pm

Hello Daylilylady‍ 
I am 51 and diagnosed with prostate cancer in March 2019. My overall Gleason score was 7 and the Grade group was 3. Because of the location of cancerous tissues my urologist informed me about high risk of surgery and we decided to select other option that was  three treatments including brachytherapy (HDR). Hormone therapy and radio therapy (23 sessions).
I did brachytherapy, and radiotherapy and doing hormone therapy. I did not have  major side effects from radio therapy until the last week of the treatments and I got  itching in my bottom that is continuing until now  (1.5 months after treatments) I did everything that they advised  but they couldn't stop this problem. 
I believe this is not a side effect for most of people and different people could experience  different side effects of radio therapy.  I have hot flashes as well that  comes from hormone therapy. 
I hope everything going well with your husband as soon as possible.

Re: Looking for information about side effects from ADT and Radiation

Posted by Daylilylady on Aug 31, 2019 7:33 pm

Thank you all for your suggestions. I bought the book about Surviving ADT and I think it will be useful. Wondering if anyone has some thoughts about how they personally coped with the side effects of the Hormone Therapy.
 

Re: Looking for information about side effects from ADT and Radiation

Posted by Jackwb on Sep 1, 2019 8:44 am

I was prescribed Lorazepam...it was wonderful. Still had hot flashes, depression, first came the ED then a total loss of sex drive, but I didn't care.

Re: Looking for information about side effects from ADT and Radiation

Posted by MrFido on Sep 1, 2019 11:08 am

I haven't posted about this topic up until now because I sense that YOU are looking for some first hand experience to relate to.
I believe I'm the only one (at this point in time on THIS site) that has been treated with radiation and ADT.
I purchased the 'books' on the topics and would encourage you to read up on these excellent reference books.
There is so much to try to digest. It will take some time to figure it all out.

In my opinion, based on what I experienced, I know that each case is different because no two PCa cases are identical.
Cancer, by nature, is a generic term and each case has some unique aspects to it. 
One thing I know for sure - MY reaction to the treatments will not be the same for anyone / everyone else.

On that basis, this is what happened to me.
Age 67 - in generally good health, in spite of the cancer.
On radiation (EBRT) - I was treated to the near maximum dosage to the prostate gland (78 gy) and about half that to the pelvic area.
My prostate is still 'intact'.
Note that My DX and staging was as follows :
Gleason = 9
Stage = T3B (advanced and aggressive)
PSA > 300
Node positive / no distant metastasis
Diagnosed in May of 2017.

I was on ADT treatment for 16 months. My LAST injection was July, 2018 - therefore, I am still withdrawing from it.
I was treated with Casodex, Lupron and was in a clinical trial setting where I may have received Apalutamide for 12 months.
I experienced MOST of the major side effects that should be covered in the suggested reading materials available for patients and caregivers.
In my case, the ADT was very difficult for me. I quit ADT outright last July, due to the side effects that affected my quality of life.

The radiation seemed a breeze at first. Didn't really feel much. About 1/2 way through treatment, I started feeling a great deal of fatigue.
The fatigue took MONTHS to subside - I underestimated how long it would take to recover.
I had some burning during urination, but that slowly cleared up. 
I also had a TURP operation, so that made urination much easier.
Today, my urinary functions are normal - no problems.
I never had any bowel movement issues, although a bit of rare / occassional blood showed up (considered normal) on the toilet paper.

I am dealing with ED as a consequence of treatment. I'm seeing a specialist and I'm making progress with injections. It is unknown as to how
this will play out, but there are ways to maintain intimate contact. The final outcome remains to be seen. You might note that archived on this site,
is a lengthy article I wrote in 'sections' about using a Vacuum pump (medical quality) which is Plan 'B' if plan 'A' doesn't work.

NEXT, you might ask, how am I doing ?

Today, we believe I am in remission - watching and waiting - my 'T' has recovered above the castration rate - and slowly climbing up.
My PSA is 0.07 and slowly climbing.
I am much stronger and feeling better as time moves forward.
My 'full' recovery / withdrawal should be next spring, when the ADT has finally left my system.

Good luck on your journey - we wish you well  ......

Re: Looking for information about side effects from ADT and Radiation

Posted by Daylilylady on Sep 9, 2019 7:37 am

Thank you for taking the time to respond. My husband had his first injection of Leuprolide yesterday. He started radiation last week so he has another 34 sessions to go. Strangely his PSA reading before he started any treatment had dropped to the high end of normal. We are not sure what to make of that. We are hoping that the intense radiation and ADT is not overkill to deal with this problem. Other people have mentioned the fatigue that comes with radiation so I think it is important to be prepared for that to happen. 
Were you able to exercise regularly through the treatment? There seems to be lots of research that suggests that maintaining a fitness regime helps to deal with the side effects. Your experience certainly indicates that this is a long, tough journey.

Re: Looking for information about side effects from ADT and Radiation

Posted by MrFido on Sep 11, 2019 12:04 pm

Daylilylady‍ 
I'm glad I could reach out - experience being one key factor for sure .....

About exercise vs. fatigue - I've read a lot of posts from men ( on other sites ) who 'soldiered' their ways through treatment
where exercise became a must do thing, in spite of fatigue etc...
 
The reason(s) for exercise are proven by the biochemistry that occurs when we work out. It is a fundamental part of the healing process.

In these cases, we aren't looking for olympic performances - you ' the patient' will benefit by doing the best you can, under the circumstances.

About the ADT / PSA ongoing readings - there is no black and white answer that summarizes individual situations.
There are SOME trends that are notable, indicating the success of various treatments.
It must be noted that the word CURE is avoided in many cases, so that should be a fact that keeps you grounded, at least in the short terms as 
the disease progresses or is managed effectively.

The last word I would use in his case is 'overkill'. Typically, from what I've learned, is that if you can try to deliver a knockout punch EARLY in the game,
the better the chance of stopping the cancer in its' tracks - assuming of course that the disease hasn't progressed to the point that the best practices,
in terms of early intervention, is the preferred route to take. In other words, once the horse has left the barn, it is clearly too late to reverse the causes that 
allowed that to happen.

Ideally, you want the PSA numbers to reach a NADIR (it's lowest score possible) that is undetectable AND stays there for several 3 month monitoring cycles.
About a year 'spent' at undetectable MIGHT allow for possible intermittent ADT holiday (perhaps permanent) you take while moving to 'watching and waiting for
further progress or evidence that the trend is holding and that 'remission' is a distinct possibility.

The so called higher end of normal (>= 4.0 is assumed). You'd like to see that number go down to (hopefully) <= 0.02, based on the accuracy of the test
(# of significant digits).

Another important thing to note - you need to be the best advocate for treatment hhat YOU can be. Do not expect the medical pros to carry the ball for you.
They will provide comprehensive service (hopefully, you're team is top notch) but they also operate in the world of BIG Pharma and will react according to 
their training and expertise. Don't assuming that EVERYTHING they tell you limits your options.

Read, research and learn, THEN choose what's best for you.

May God bless on your journey .....

Re: Looking for information about side effects from ADT and Radiation

Posted by Jackwb on Sep 11, 2019 3:04 pm

MrFido‍  , Regarding using PSA as an indicator of prostate cancer status is not always the most reliable way of monitoring. I recently learned and posted a friend's experience...his PSA was always < 4.0 but after a TURP, the pathology indicated that he has an aggressive, advanced, metastasized type of prostate cancer (Stage D2), it's a rare, hormone resistant strain, very resistant to any kind of treatment.

more info here:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2873892/ 

Re: Looking for information about side effects from ADT and Radiation

Posted by MrFido on Sep 11, 2019 6:33 pm

To Jackwb‍ 

I would agree with your comments about PSA. There are many advanced cases that have broken all the PSA / testosterone  'rules'.

In the most recent case we have been discussing, her husband has already been diagnosed, staged and offered a treatment plan.

I'm sure we all wish them the best .....

 

Re: Looking for information about side effects from ADT and Radiation

Posted by Daylilylady on Sep 12, 2019 8:41 am

Thank you for taking the time to reply to this concern. The support is really appreciated. Fortunately my husband is very athletic and has always been very committed to exercise so I hope he will manage to continue a regular exercise program throughout his treatment. I think you are very right about needing to be out own advocates. We were very happy with the initial oncologist who was in charge of my husband's treatment. We shifted to a satellite centre for the radiation for convenience and have a new supervising oncologist who clearly has little interest in his job or in answering questions. My husband asked for a bone density scan prior to starting ADT because it had already been noted that he had early indicators of osteoporosis and he wanted a baseline measure. The answer was simply no you don't need that-no explanation why not. We do have a fabulous GP who will hope will be able to offer us support when this guy can't be bothered.   Thanks as well for pointing out that a strong initial treatment plan offers the best chance of remission. We will remember that as we struggle through the the ADT. 

Re: Looking for information about side effects from ADT and Radiation

Posted by Cynthia Mac on Sep 13, 2019 8:14 am

Daylilylady‍ , I hope your husband will keep his exercising up to the best of his ability, too.

My dad isn’t an “exercise guy”, but he is a real energizer bunny in that he does not stop moving. His “exercise” has been done in his garage. In a way, that ha been his home gym. He has done everything from repairing small engines and restoring vintage vehicles to forging steel and wrought iron (which is great exercise, but only on the arm that swings the hammers!) 

So, when Dad had his prostate cancer 17 years ago, his exercise stopped completely during his recovery, and his during subsequent radiation and hormone treatments, which he had about 5 years after his surgery. Years later, his osteoporosis has advanced far enough that a recent bone scan revealed apparent rib damage from a fall he had had about a week before the test.

Now, osteoporosis can run in families - Dad’s mom had it and his sister has it, BUT, Dad is in his second round of chemo in two years (for lung cancer unrelated to his earlier prostate cancer), so his current scan could be revealing a deterioration of the ones caused by his treatments. 

You said, “it had already been noted that he had early indicators of osteoporosis” - without knowing what those are, could the supervising oncologist have had enough information to satisfy his needs? Could he have heard “bone scan” when you said, “bone density scan?”

I hope your GP will be willing to oblige you, particularly since your husband is already showing signs of osteoporosis.

While looking into your query this morning, I came across a website, https://choosingwiselycanada.org/about/ where you can learn more about both bone density scans and bone scans. The page https://choosingwiselycanada.org/urology/ talks about questioning the need for a bone scan for prostate patients whose cancer is low-risk for metastasis, and https://choosingwiselycanada.org/bone-density-tests/ offers more detail about bone density tests.
 
Hope this helps.

Re: Looking for information about side effects from ADT and Radiation

Posted by WesT on Sep 17, 2019 11:39 am

Daylilylady‍ As has been eluded to doing whatever exercise he has been advised to do is a good part of the healing process.  My doctor had me up and wandering the hospital corridors the day after my surgery.  He did advice not to lift or overdue it but walking was good.  He even advised that I could attempt stairs but not to stretch or pull my incision area at all.

If the doctor says not to do something, I would heed that warning though.

Wes