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Decision Time RP or ADT/HDR/EBRT

CMO2021
Posts: 38
Joined: Feb 2021

After waiting  8 weeks for my MRI Fusion biopsy the results are in and not great mostly Gleason 9 (4+9) and one Gleason 9 (5+4).  Have Bone Scan and CT Thursday and Friday of this week.  Hoping it hasn't metastasized but concerned.  I have appointments set  up at Memorial Sloan Kettering with Medical Oncologis, Radiaiton Oncologist and Surgical Oncologist.   Trying to stay level headed and make the best decision, but need CT and Bone Scan results before I can really move forward but need to make a timely decision due to the agressiveness of the PCA. Any others here treated at MSKCC. 

PSA = 4.1
 
Gland ~ 4.0 x 2.7 x 5.0 cm.
 
Volume = 28.0 gms.
 
PSAD = 0.14
 
PSA2 = 20%

DIAGNOSIS

A PROSTATE, LL APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 3 + 4 = 7, GRADE GROUP 2, (5% CRIBRIFORM GLANDS), INVOLVING ONE OF ONE
CORE; 9 MM TUMOR LENGTH (80% OF PROSTATE CORE); PERINEURAL INVASION PRESENT.

B PROSTATE, L APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 3 + 4 = 7, GRADE GROUP 2, (5% CRIBRIFORM GLANDS), INVOLVING ONE OF ONE
CORE; 12 MM TUMOR LENGTH (90% OF PROSTATE CORE).

C PROSTATE, LL MID; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 12 MM TUMOR LENGTH (85% OF PROSTATE CORE).

D PROSTATE,
L MID; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 13 MM TUMOR LENGTH (90% OF PROSTATE CORE).

E PROSTATE, LL BASE; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 12 MM TUMOR LENGTH (80% OF PROSTATE CORE).

F PROSTATE, L BASE; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 13 MM TUMOR LENGTH (90% OF PROSTATE CORE).

G PROSTATE, RL APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 3 + 3 = 6, GRADE GROUP 1, INVOLVING ONE OF ONE CORE; 1 MM TUMOR LENGTH
(10% OF PROSTATE CORE); PERINEURAL INVASION PRESENT.

H PROSTATE, R APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE

CORE; 3 MM TUMOR LENGTH (20% OF PROSTATE CORE); PERINEURAL INVASION PRESENT.

I PROSTATE, RL MID; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

J PROSTATE, R MID; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

K PROSTATE, RL BASE; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

L PROSTATE, R BASE; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

M PROSTATE, RO1 #1 LM AXIAL; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA,
GLEASON SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING
TWO OF TWO CORES; AGGREGATE TUMOR LENGTH 20 MM (95% OF PROSTATE CORES).

N PROSTATE, RO1 #1 LM SAG BASE; CORE BIOPSY: INVASIVE PROSTATIC
ADENOCARCINOMA, GLEASON SCORE 5 + 4 = 9, GRADE GROUP 5, WITH INTRADUCTAL
CARCINOMA, INVOLVING TWO OF TWO CORES; AGGREGATE TUMOR LENGTH 22 MM (95% OF
PROSTATE CORES).

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

CMO,

Sloan Kettering is as good as any other facility in the world for PCa.   I'm sure several guys here have utilized them.  It is a good place for you to be at the moment.  DO demand a lead oncologist with serious, specific focus with advanced PCa....not the new kid just showing up out of Residency. 

There is probably around a 0% chance that you do not have some metastasis, although it may not show in the bone, or on CT/PET.   I base this upon the perineural invasion and essentially 90% volume occupied by Gleason 9 tumors throughout the gland.   No responder here writes with medical training or certifications of any sort.  With HT, RT, and possibly other treatments, your prognosis still might be good, to possibly quite good.   Hoping for the best results possible from your further tests,

max

CMO2021
Posts: 38
Joined: Feb 2021

Hi Max,

I agree  the mets regardless of what shows on the CT or Bone scan. Once I have the results I will push for  genetic testing to see the potential of using a PARP inhibitor in addition of  some of the other treatment options of HT and RT.  I appreciate your reply. I am trying to keep positive attitude and worry about the things I have control over. I will continue to post as I  move through this journey.

 

Chris

eonore
Posts: 109
Joined: Jun 2017

Dear Chris,

I echo everything Max stated.  Let's hope that if the cancer has escaped the prostate, that it is still localized so that it can be zapped successfully with radiation.  In the meantime you are doing everything you can, and Sloan Kettering is as good as it gets.

I wasn't aware that a Parp inhibitor has been approved for prostate cancer.

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

CM,

I think you doing well in investigating multimodal approaches. Many guys with Gleason score 9 are doing well with protocols involving combination therapies. There have been reports on aggressive surgeries followed by radiation in voluminous cancer treatment in young guys, dissecting the whole gland for the solo intent in diminishing the burden of the cancer. Surely more therapies means more risks and side effects to which you should give consideration (some consequences cannot be avoided). Your present quality of life will be affected. Get your family involved in all decisions.

I hope that you get good news from the scans but the previous MRI can already provide you details on closer malignancies. In your next meeting with the radiotherapist try obtaining details of the extent of RT protocol he proposes to a voluminous Gleason score 9 cases.

Will wait to read your next update.

Best,

VG 

CMO2021
Posts: 38
Joined: Feb 2021

VG and Eonore,

Thanks you for your comments.  My CT scans and Bone Scans did not show any metastatic disease.  I know that there are likely micro mets hanging out somewhere but will take the positive new that gross mets were not seen.  I spoke with RO at MSK today and his approach would be HDR- Brachy then IG-IMRT for 5 weeks and ADT for 18 months.  He was very informative but not pushy just trying to give me a balanced view of the treatment.  I meet with the Medical Oncologist this coming Tuesday and then the Surgeon the last week in April. I will keep you all posted and I appreciate you insight and your support.

CMO

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

CMO, it seems that you have numerous particulars going for you:  You are well-informed, realistic, calm, and in excellent medical hands.  The Brach with long-term IGRT/IMRT is potentially curative, with the HT helping the radiation do its thing.   I hope all goes well, and that you decide to continue sharing your interesting but challanging case,

GeorgeG
Posts: 152
Joined: May 2017

I spoke with multiple people at MSK when I was doing my research and of course you see them as a leader throughout the literature. You are in good hands particularly as it relates to radiation therapies, they are at the leading edge. You have taken the best first step by choosing your medical team well. Stay positive brother.

 

George

 

CMO2021
Posts: 38
Joined: Feb 2021

Thank you Max and George,

I will keep the group posted as I move through this Journey.  

CMO

CMO2021
Posts: 38
Joined: Feb 2021

I met with the Medical Oncologist at MSK today he provided a balanced risk benefit for both RT and Surgery.  In addition he will run the MSK-Impact testing on my biopsy samples and a blood sample. Due to being Gleason 9 I was eligible to have the test run as part of their ongoing clinical studies with MSK-Impact.  I meet with the surgeion in  two weeks and will make a form a decision on initial treatment.  I will continue to post as I continue on this journey.

 

CMO

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

CM,

The approach involving HDR + IMRT covers a wider area than a single surgery (RP) and it is less invasive than an approach involving RP + IMRT, both typicalin Gleason 9 therapies. I believe that the medical oncologist has informed you on the side effects attached to each treatment. 

I recommend you to decide on a option only after clearing all doubts and discussing the details (pros and cons) with your family.  This is a difficult moment in your life so that take all the time you need to reach to a conclusion. 

I would like to know the results of the "impact test" but you need to consider that these nomograms are informative only. These are based on data collected from cases with similar characteristics not exactly your situation.  They do not consider the age of the patient (life expectancy) or the deterioration of the quality of life.

You doing well in gathering the needed details.

Best wishes. 

VG 

 

CMO2021
Posts: 38
Joined: Feb 2021

I met with the surgical oncologist at MSK.  The one discouraging finding was on MSK rereading the CT and MRI from my local hospital they found a suspect node (right external iliac) that was possibly "metastatic" spread to the LN. Despite this he felt with everything considered I would be a good candidate for surgery if that is what I chose. He was informative and did not push surgery over RT.  He said  I could not make a bad decision by choosing RT or Surgery it was just what potential side effects I was more comfortable with.  He also stated that sometime within the next 5 years I would need RT.  He was clear that Surgery was very unlikely to be curative. He also noted that I should think about my PCA as  managing a chronic illness. Given the results from the ASCENDE-RT trial  I am leaning toward RT with ADT and HDR Brachy Boost. I am concerned about the ADT side effects but given my G9  PCA which is likely locally advanced node positive, I think the multimodal RT treatment makes the most sense to me.  I have appreciated all the input and insight for the member on this list.  Still working to make a final decision on treatment.

CMO

Gleason 9 Prostate cancer

Georges Calvez
Posts: 532
Joined: Sep 2018

Hi there,

You could go down the route that I took which was a prostatectomy to remove the gland plus the lymph nodes, etc then ADT plus radiotherapy to clean up any last bits in the prostate bed, etc.
It is possible with your diagnosis that you will have a measurable PSA post RP, so you could well face salvage radiation with ADT immediately post RP, so you will effectively face what I voluntarily signed up for.
Initial treatment has three possible outcomes; you could be cured, this is unlikely but possible, you could go into remission, you will be free of prostate cancer for some years, this is quite possible, you will need further treatment for life, this is possible and maybe more probable than an outright cure.
You are a sample size of one so don't read too much into nomograms and the like.

Best wishes,

Georges

CMO2021
Posts: 38
Joined: Feb 2021

Georges,  Thank you for sharing your experience with me.  What was your Gleason Score prior to surgery. Every physician I met with RT, MO and Surgeon all stated with G9 that I would need RT down the road even with surgery unless I was one of the outliers that was cured.   So my current plan is to go with the ADT/HDR/RT.  I am realistic that my best hope is for a durable remission.  This group helps keep me grounded and sane so I truly appreciate you sharing you experience.

Best regards,

CMO

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

Hi again, 

I do not know what lead you to decide in the combi treatment ADT/HDR/RT but this doesn't make part in the Ascend-RT trial you mentioned above.

The combination of HDR brachy plus IMRT has been a typical treatment in risky voluminous PCa cases showing high successful outcomes,  but it is connected to higher RT side-effects, similar to the results obtained in the Ascend trial. In other words, brachy assures better outcomes (longer period of free survival) but at the cost of higher genitourinary, gastrointestinal and erection dysfunction consequences (also typical in RP/RT/ADT combi treatment). In fact,  this is probably what the surgeon told you in your consultation.

Ascend trial shows that EBRT, in terms of the killing process, is better if delivered in higher radiation doses (81 Gy) than if delivered at lower doses (50Gy). This fact can be extended to the typical radiation volume used in RT protocols (68 Gy) in the combi RP/RT or in SRT.

The quality of life is in jeopardy. One can try to eliminate the bandit for good in one goal risking the cumulative side effects  or try to eliminate it setp by step in a sequential type of treatment. 

Probably one more consultation with the MO is advisable to discuss about the details  of your chosen option. I think that you doing well in investigating the details involved to reach to that final decision. 

I wish you the best. 

VGama

CMO2021
Posts: 38
Joined: Feb 2021

VG,

 

Thank you for your thoughts and inputs. I appreciate your experience and knowledge With aggressive G9 (multiple cores) with perineural invasion, cribiform cells and MRI suggestng EPE with extension to seminal vessicles and the suspect node.  The chances the PCA is confined to the prostate is small and the liklihood of needing RT and ADT down the road is real.  Therefore I am looking to take an aggressive approach. I think what your suggesting is  my quality of life might be better with Surgery then RT if needed due to  being unable to achieve margins then go to RT and likely ADT.   MO put it like this you deal with side effects upfront with surgery or a farther down the road with the RT/HDR/ADT. I am meeting with the MO on Tuesday.  Thank you for raising additional points I should  consider.

 

Best regards,

CMO

Georges Calvez
Posts: 532
Joined: Sep 2018

Hi there,
You can read about my experiences here;
https://csn.cancer.org/node/318066
I doubt that you are looking at RP and RT plus ADT somewhere down the road. I suspect that you will have a significant PSA reading after the RP so they will swing you straight onto ADT, eighteen months worth at least, plus 66 Gy of radiation.
So your choice is RT/HDR/ADT or RP/RT/ADT.
One of the things about radiation is that it has significant cumulative effects, the first week or two is OK, then gradually you notice the effects of being toasted.
I was quite lucky but by the end of the 66 Gy I could feel that the inside of my bowel had significant irritation and my urine was ever so slightly pink if I put a few drops on some toilet paper.
You really do not know how you will respond in terms of effects, you might breeze through it relatively speaking, or it might turn into what will seem to be a medieval trial.
RP is not a picnic either, in your case I would guess that you are looking at erectile dysfunction, the chance of incontinence is higher when you couple RP with RT.
I was lucky insofar as I have the first but dodged the second.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

CMO,

Please note that I am not a doctor and do not intend to disturb your thoughts in therapies. I think that you researched well so you will decide on the best option.

In my case, I gave preferences to quality of life but I did it because of the type of cancer I was confronting. Yours shows to be more aggressive and the type of cells described in the pathologist report got particulars known to be more resistant to certain treatments. RT in cribriform type of cancer seems to be lesser effective, so I recommend you to discuss this sort of matters with the MO in your next consultation. I wonder if HDR brachy works better in this sort of cases.

Here is one article on the issue to help you in formulating a list of questions;

https://pubmed.ncbi.nlm.nih.gov/31059665/

We need luck in confronting this disease.  Let's hope that things work in your favor. 

Best

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

I have been following your discussion here following your doctor imputs.   Impressionistically, I would think that surgery would not add much curatively, but imposes significant recovery.   I am not familiar with the trial protocols Vasco discussed, but in general, Trials are a good way to secure the newest treatmens, with excellent follow-up.  Old School, a case like yours would receive IMRT and HT, almost every time.

Georges Calvez
Posts: 532
Joined: Sep 2018

Hi there,

I think it is a tough choice between HDR/RT/ADT and RP/RT/ADT for advanced cases.
In the former you are trying to destroy the cancer in the prostate and the surrounding tissue with HDR and then adding pelvic radiation to knock out any satellites.
The amount of radiation that you are using will have side effects that may be more or less manageable.
The latter choice uses surgery to remove the prostate, surrounding tissues and lymph glands, so hopefully you get the bulk of the tumours, then you use additional radiation to clean up any stragglers.
In both cases you are looking at extended ADT of between eighteen months and three years depending on individual circumstances, the opinion of the medical team, how lucky you feel, etc.
If the cancer is locally advanced then both methods have a good chance of a cure or long remission, they may give a significant extension to the time without heavy drugs or life for cases with cancer outside the local area.
But they both carry the risk and certainty of significant side effects.
It is Solomon's choice, but we are not Solomon and neither are the doctors.

Best wishes,

Georges

CMO2021
Posts: 38
Joined: Feb 2021

VG, Max and George,

 

Thank you for your thoughts, suggestions and impressions.  I have taken a little time away to process information.  I agree with  VG  regarding the study he referenced which shows the challenges when cribiform and/or intraductal carcinoma are seen on biopsy  which show increased risk of poorer outcome. My research show this also holds true for RP.   I am disappointed that the study didn't do separate analysis for the patients that received RT + ADT. Though if you look at journal articles  there is a mixed response with the combination. There is some evidence that ADT that includes abiaterone does provide some improvement in outcome with RT.  There are also clinical trial enrolling subjects with neoadjuvant Abiaterone with RP.  MSK does ADT with Abiraterone with their HDR and follow-up IMRT.  I meet with the Brachy therapy RO on Wednesday.  I met with the MO again this week  and after talking I am still leaning toward the ADT (firmagon) with Abiaterone and the  HDR Brachytherapy and the IMRT.  That is what my gut is telling me (I know not terribly scientific).  Having a place to get different insights and put my thoughts down in writing has really been helpful as I formulate my final decision.   Thank you!

Georges Calvez
Posts: 532
Joined: Sep 2018

Hi there,

At the end of the day you have to go with what you consider to be right, there is no guaranteed treatment with minimal side effects that will cure, nor is there a way of scientifically deciding between the various treatments.
One of the advantages of RP/RT/ADT over HDR/RT/ADT is that if it is successful your PSA will fall to close or below the limit of detection and stay there. With HDR/RT/ADT you will have some prostate cells remaining, and they will produce some PSA. Some men find that the rate is very stable and they feel happy and confident with this, others find that it moves up and down more or less, with a consequent effect on the worry cells in some cases.
It is made worse by the fact that PSA is not a direct indicator of possible cancer activity, so maybe nothing is happening at all, or maybe it is.
Somewhere around the eighteen month point seems to be the sweet spot for ADT, it maximises the effect on the cancer while avoiding the worst of the side effects of ADT like irreversible castration, osteoporosis, etc.
Most doctors seem to agree that three years, which was the norm in advanced cases, is too long, but it is hard to find a consensus on how long is long enough.
I did nineteen months on Firmagon and on the whole it was not too bad, but I was happy to stop.

Best wishes,

Georges

CMO2021
Posts: 38
Joined: Feb 2021

Hi Georges,

Thank you, for everything you have shared.  Yes  knowing that the PSA should hopefully be zero or close to it after RP is a definite plus vs dealing with the time to reach nadir with RT and the bump ups which may or may not be something. Not an easy decision but one we all have had to make with the disease.

Thank you,

Chris

CMO2021
Posts: 38
Joined: Feb 2021

I want to thank everyone for your support and insight.  After additional thought and additional consultation with the MO, RO and Surgeon I think my best course forward is ADT/HDR/IMRT I am starting with Firmagon and abiraterone (18 months)after three months of ADT I will have the  HDR Brachy followed by IMRT four weeks after the HDR Brachy.  I  will continue to  provide updates on my journey.  I am thankful for this group, and my supportive wife and family and friends.

Chris

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Chris, your decision involved a rare combination of complexity, new-ish modalities, and world-class experts at SKCC advising you.   While it is a situation that is somewhat of an outlier for first-line response, all of the guys here who have successfully battled metastatic disease see it as wise, so so do I.  It was clear before you started that HT of some variety would be the heart of your recovery.  The Brach and IMRT are nice additions, and retain some hope of curative outcome.  Good luck and continue writing.  We always learn more here than we teach,

max

Josephg
Posts: 289
Joined: Jan 2013

CMO2021, Your decision is made, and I wish you the best of outcomes on this leg of your PCa journey.

Old Salt
Posts: 806
Joined: Aug 2014

I hope that having come to a decision will be a relief.

Best wishes on your journey; it will take quite a while, but you willl get there.

Just for comparison, I (with several intraprostatic Gleason 9 lesions) had three sessions of SBRT followed by 25 IMRT sessions. Also on ADT (Lupron) for 18 months. 

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

Great news for reaching a decision. I hope it works well and gives you peace of mind for the years to come. 18 months on ADT is just the typical in this sort of combination treatment, starting the radiation process two to three months into the hormonal. I just wonder if Abiraterone is the best to those ADT naive guys. Surely there have been more interest in the use of abiraterone since its generic become available (at 1/10th of the original price) but one shouldn't forget that this is a drug belonging to the second line ADT protocols recommended when refractory of the more common antiandrogens occur (if ever). Abiraterone requires the use of Prednisone which could interfere in the appropriate function of the immune system. It requires closer vigilance.

I am eager to read your update along the journey.

Best wishes for full success and luck in the spectrum of the side effects.

VGama

CMO2021
Posts: 38
Joined: Feb 2021

Hi VG,

 

Great question as always regarding the abiraterone as I asked the same question.  My understanding is that they added it into my treatment  due to the high risk cribiform and intradcutal histology. Though their not a lot of information on its use in ICD-P.  I will keep everyone posted as I continue my journey.

 

Best regards,

Chris

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Best of luck on your journey with the beast.

CMO2021
Posts: 38
Joined: Feb 2021

 Just a quick update the plan is to have my HDR Brachy on 7/26/2021.  I will update as I  move forward with ADT.

Chris

MK1965
Posts: 223
Joined: Jun 2016

Great choice to have HDR brachytherapy. Two treatments in a week or so is excellent.

Also, you are avoiding to have life changing SE that change man aAntony and functionally for ever.

once again, congratulations on excellent choice for your treatment.

MK

 

Georges Calvez
Posts: 532
Joined: Sep 2018

Hi there,

You were faced with a choice between the devil and the deep blue sea.
Whatever your choice, you were going to face side effects of more or less severity, some of which were shared and some of which were unique to one treatment.
When do you have your first pair of Firmagon injections?
That stuff is like falling off a cliff, one day you are walking around with a normal quota of testosterone and the next you are not.
The injections are fairly painful in most cases, I used to take ibuprofen, other people use ice packs, etc.
There is a definite link between the skill and experience of the person who administers the stuff and the subsequent irritation.
Hopefully you will find it not too bad.

Best wishes,

Georges

CMO2021
Posts: 38
Joined: Feb 2021

Dear All,

Thank you for all of your support its hard to express how much it helps.  

Georges,  I should have posted that I had my  Firmagon injections on May 18th.  Yes those little buggers stung and definitely  more sore for a day and then started to get better.   Now  I have these two bumps like large welts or Hives on my stomach.  Doing ok so far just started to have some hot flashes.  Bought a stationary bike and resistance bands.  Haven't quite figured the best workout for the bands but I get on the bike every morning and evening and  break a sweat.  Also get out walking with my wife and our dogs. So hoping that it will help reduce some of the potential effects of ADT if nothing else I think it helps me mentally.

I am fortunate to have a very supportive wife who is somewhat amused (in good way) with my hot flashes its been  a bonding moment.  Additionally I am fortunate to have a friend who was diagnosed at 50 and went 13 years then recurred with mets to the bone which responded well to ADT.  Its nice to talk with someone face to face who is on this journey. So I am building my support group between, this board, my wife and my friend.  Sorry rambling a bit but so appreciative for you all.  

Chris

Josephg
Posts: 289
Joined: Jan 2013

Great strategy, CMO.  You will find that your 'drive' to work out regularly will diminish greatly as the ADT takes affect, but 'force' yourself to remain active and consistent with your workout plan.  It really does help to minimize the effects of ADT.  I am on my second round of ADT, and I can personally verify that what you are planning is workable and will be greatly beneficial to you. For me, it is a treadmill and a set of adjustable dumbbells.

Hopefully, your medical team recommended that you take daily doses of calcium and vitamin D, to help reduce the effects of bone loss, associated with ADT.

And yes, your wife being supportive is huge.  Ask her to 'push' you, whenever she observes that you might not be sticking with your workout plan.  She can be your task master, as well as being your cheerleader.

Like you, when I complained to my wife about the hot flashes, she replied (good naturedly), "All woman go through this in their lives, so man up!".

CMO2021
Posts: 38
Joined: Feb 2021

Josephg,

Thank you for the support and advice.  Yes I am taking calcium with vitamin D.  I have told my wife to kick me in the butt if she sees me slacking. A quick question did you notice a big difference from the firgammon compared to when you started lupron.  I am also on abiaterone (Zytiga).  Just curious to see if I can expect an increase in symptoms when I start the Lupron.  Thank you for our insight.

 

Chris

Josephg
Posts: 289
Joined: Jan 2013

CMO,

I have never used Firmagon, or at least, not yet.

My first round of ADT was a cocktail of Lupron and Casodex.  I took Casodex for a month, and then I received my first injection of Lupron.  For me, the effects of Lupron took place slowly after the first injection, and it took about 2 weeks for the typical symptoms to take full effect.

My current round of ADT is a cocktail of Eligard, Zytiga, and Prednisone.  I took Zytiga and Prednisone for 2 weeks, and then I received my first injection of Eligard.  For me, the effects of Eligard took place slowly after the first injection, and it took about 3 weeks for the typical symptoms to take full effect.

As you can see, the symptom occurrence trajectory is similar for both rounds of ADT, as I believe that Lupron and Eligard are essentially the same hormone, with the main difference being how they are injected into your body.  Lupron is injected into muscle tissue (rear end), and Eligard is injected into fat tissue (stomach).

The symptoms for both rounds of ADT for me are similar, with the only significant difference is that with my current ADT cocktail, I get alternating hot flashes and deep chills.  So, I am continuously adding or throwing off clothing, depending on which part of the hot flash and deep chill cycle that I am on at the moment.  I do not recall having the deep chills, when I was on my original ADT cocktail.

CMO2021
Posts: 38
Joined: Feb 2021

Thank you Josephg.  I'll let you know if I see a significnat difference in the side effects when I start the Lupron.

Georges Calvez
Posts: 532
Joined: Sep 2018

Hi there,

It is worth noting that the effects are time dependent.
Some of them like loss of libido and hot flashes set in early and continue throughout.
Testicular shrinkage takes a few months, but eventually they will be like peanuts.
Loss of most of your body hair takes longer as it takes a while to fall out and not regrow.
There are psychological effects as well, they tend to creep up on you. After a few months I would start crying for no reason at all.
Men who do six months of testosterone deprivation generally find it easier than long termers doing eighteen months or more.
Men with Stage 4 disease can be on ADT for life or castrated, this can be more or less hard to bear depending on the individual.

Best wishes,

Georges

CMO2021
Posts: 38
Joined: Feb 2021

Thank you Georges,

I am concerned about the psychological effects and hoping excercise and trying to keep a positive attitude will help.  I am on track for at least 18 months of ADT so I'll just take it one day at a time.  Thank you for sharing your experiences.

Chris

CMO2021
Posts: 38
Joined: Feb 2021

Just checking in I'm about 6 weeks into my ADT + abiraterone.  Side Effect have been tolerable and I feel pretty good.  Labs have been stable  my first l PSA  since starting the PSA was 0.7 ng/ml down from 10.1 ng/ml.  I've been told the decline may be slower over the next couple of months, but I hope I will be close to undetectable by the time I start my HDR Brachy.

Old Salt
Posts: 806
Joined: Aug 2014

The decline in PSA indicates that the ADT is effective. 

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

The decrease suggests that your type of cancerous cells respond well to hormonal treatment. You can depend on ADT in the future if such becomes necessary. I wonder if you had a testosterone test before starting treatment.  If not, I would recommend you to get one now for future evaluation.  T should be lower than 30 ng/dL.

Let's hope that RT works well too.

Best

CMO2021
Posts: 38
Joined: Feb 2021

Thank you both! Yes VG great question as usual, I did ask about adding a testosterone level to my next blood draw and it has been confirmed it will be added to the next blood draw.  I always appreciate the insight of the members here. Thank you!

CMO2021
Posts: 38
Joined: Feb 2021

Labs today at MSK,  PSA down again from 0.7 to 0.35,  the Nurse practitioner had  told me after the dramatic decrease last month that the decrease would be slower, but I am happy that it decreased 50% from last months low. Not so thrilled that my Ast 39, Bilirubin 1.6  and LDH 256 are elevated.  I know some of the AST and Bilirubin can be due to Zytiga.  My Alkaline phosphatase actually decreased to 75 and has consistently been within normal limits.    I hoping the LDH is partially due to busting my butt pulling the engine our of my Father-in-laws vintage Studebaker mail truck (ZIP Van). All in all I am still feeling good and the ADT side effect have been tolerable and I feel fortunate that overall  I feel pretty good.  I have my HDR Brachy therapy two weeks from today.  I'm anxious to get it done. Thanks for listening/reading. 

eonore
Posts: 109
Joined: Jun 2017

That's great news.  It is admirable how you have taken this bull by the horns. Keep up the great attitude and outlook.

As to the Zip van, I am old enough to have ridden in Studebakers and seen them on the road regularly.. However, I had never seen the Zip Van.  I googled it and what a great looking vehicle! Alot of fun.

Eric

CMO2021
Posts: 38
Joined: Feb 2021

Thank You, for your encoragement.  The Zip Van is a cute little truck.  The engine comes out by droping the whole front suspension out of it with the engine and transmission in what they call a bogie.  Also last vehicle that came of the Studebaker production line.

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

I also think that those high levels are due to Zytiga. I recommend you to balance the situation with diets good for anemia, kind of iron rich foods. Vitamin B12 from seafood is also good.

Zytiga is linked to adrenal and kidney problems too. You can ask your GP to include periodical tests for checking these organs function.

Will wait for your next report.

Best,

VG

CMO2021
Posts: 38
Joined: Feb 2021

Thank you VG for the suggestion for diets definitely an area I can improve on.  I have been trying to eat more fish.  Looks like time for more fresh spinach salads which  I really enjoy this time of year.  I will keep you posted as I continue on this journey. I will request the additional test from my GP.  Best Regards, CMO

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

CMO, 

As I have been fatigued and anemic for well over a decade from a variety of causes (but mostly from two cancers), let me say that I take a Super B OTC supplement daily.  It is great for more energy (B12 is the main ingedient in most 'energy' drinks).  Plus, my Super B also contains B6 and a variety of other positive elements.  The B-vitamins are all water-soluble, so accumulation in the body above normal is virtually impossible  (fat-soluble vitamins are of course much more potentially dangerous).

At doctor orders, I take an Iron supplement daily.   Besides spinich, collard greens (I know, not really a 'thing' in NYC) are among the plants richest in iron.  Plant-based iron avoids some of the 'side-effects' of pill-form Iron supplements, which can be a 'colorful' experience.......

I also drink around 60 ounces of strong coffee daily, but even with all of the above, still require at least 12 hours of sleep a day, sometimes more.   I find disease and medication fatigue a hard thing to shake.    As with any med, ask your doctor before using any supplement; many supplements are prohibited during treatments, and can counteract the efficacy of the doctor's meds.   Medical oncologists seem more aware of this than urologists, so if you have urologists and medical oncologists, ask BOTH before making changes.

 

MK1965
Posts: 223
Joined: Jun 2016

 Max,

I used to drink around same amount as you did. Always drink double expresso with a extra bit of water.

Used to drink 7 double shots while working 10 hours daily, remotely from home. Had always cup of coffee on my desk. 
Ask me how many times I change my key board? Almost monthly.

In April, my heart started racing, I felt like fish is flipping in my chest and started having pressure in my chest like heavy sand back is on.

Started getting heart rates between 180 and 205 For 10-15 minutes. After that I would feel wiped out for the rest of day.

In May, diagnosed with AFib, SVT, PAC. Had consultation with electro physiologist which strongly recommended Cryogenic-ablation.

In 2 months, had 18 Afib  episodes registered with my Apple Watch. Had coronary Catheterization- my coronary arteries are clean as a whistle.

Still, did not make decision about ablation to sourt out mess with my electrical impulses.

MK

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