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For my spouse

RADIATION HOPEFUL
Posts: 218
Joined: Dec 2010

My husband was a frequent user of the forum.  He was initially diagnosed with prostate cancer in November 2010.  Gleason 9, most cores positive with cancer --initial PSA 59,  Negative bone scans. He stopped using the forum when he became severely disabled from MS.  I used to read his posts and the replies.  He made many friends on this site and they helped him a great deal. 

We learned for the first time that he also had the diagnosis of MS in the Fall of 2015 --the MS has been much worse than anything else to deal with and very disabling.  6 months after the diagnosis he was wheelchair bound, then 6 months later bedridden with use of wheelchair with assistance.  He was placed in nursing home 3 months until I could arrange to be home with him.   I stopped working to be home with him full-time in October 2018.  When they placed the feeding tube in him in June 2018, I was told by some nurses that he could live another 2 years.  I thought I would be bringing him home and helping him in and out of the wheelchair like before but he soon developed a contracture in his left leg. Now I can't get him into the chair.

I was very upset that they did not follow my request and get him his Eligard shot when he was in the hospital.  His PSA is now 8.7.  I asked to have his shot because I feel it will help prevent bone pain.

Some of the people involved in his care seem to be in a big rush to get him into Hospice care.  When I asked how they would treat bone pain on Hospice I was told with Dilaudid or Morphine.  I know he could not tolerate these drugs.  He would have hallucinations and other problems.  He did well on the 6 months Eligard shot and I wanted him to have it again.

Please if anyone understands let me know if ADT is still suitable for the end of life care.  I thought it was the best option and made the appointment for the shot to be given to him again.  Too many people involved in his care seem too anxious to let him die from cancer.  This is a very difficult time for me.  Can anyone tell me if I am wrong in requesting the shot for him?  I know I am holding on but I still want what is best for him.  Thank you.  

 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Dear Mrs RadHope,

I am sorry for the news about your husband's Multiple Sclerosis diagnosis. He used to be a frequent poster here updating his good progress in the RT therapy but since 2014 that I haven't seen any more of his entries. His last post in Apr, 2014, informs about the PSA of 0.09 which was the lowest since the RT therapy of 2011 (PSA=59.0 ng/ml). Surely this value was still masked by the Eligard he was taking, and I wonder if he did stop the hormonal treatment at the time, as he wished and was indicated in his post.

I believe that the PSA of 8.7, indicated by you above, is unmasked (has no influence of Eligard) so that it may be the true PSA. It is higher than the 0.09 of Apr. 2014 but it doesn't mean that the cancer is back. Your husband has the prostate gland in place with many benign prostatic cells producing PSA serum. Apart from that he was experiencing sort of inflammation caused by his issue with incontinence and bladder bleeding that required urinary catheterization. A surge in prostate cancer also could be the reason but those items pointed above all contribute to increases in PSA.
The value of PSA=8.7 is high but much lower than the 59.0 of 2011. Eligard could do the trick again in lowering the PSA today but it would work the same, effectively, if the shot is taken latter when the PSA reaches closer to the initial level of 50. I recall your husband being very concern with the value of the PSA but one is not treating the PSA. One needs to find firstly what is causing its existence.

You shouldn't blame yourself for this surge in the PSA. You are being fabulous for what you have done in his behalf. Caring a bedridden is not easy task and requires loads of attention. I wonder what could be the cause or initiation of his MS status. Is it a side effect acquired from the radiation therapy?
He did electro-cauterization surgery of blood vessels in the bladder before MS diagnosis. Could something like that be linked to the MS?

Dilaudid or Morphine is given as pain killers when the patient is suffering and is dying. I wonder the real health status of your husband. Why are they suggesting hospice?
I do not think that prostate cancer will kill him even with an increasing PSA. In fact all image exams along the years were negative for metastases in bone or other places. He did take Prolia for his osteopenia but he never checked any deficiency in Vitamin D which could accelerate bone loss leading to pain. Can't he use softer pain killers?

Eligard would not interact with pain killers so that it can be taken even with the drugs you mention above. Surely it causes side effects that will disturb in part the neurological system but, I believe that it has no connections with the MS issue. This is affected by the immune system. In your shoes I would get a second opinion from a specialist on the overall matter, before deciding on hospice.  

 

For those interested in his story they can read it in here;
https://csn.cancer.org/node/210934

Some of his other threads are listed here;
https://csn.cancer.org/search/node/Radhope

One of his last posts is in here;
https://csn.cancer.org/node/267160

I hope you find a way that is comfortable to you and him. He knows me by VGama. Please give him my regards.

Best wishes,

VGama

RADIATION HOPEFUL
Posts: 218
Joined: Dec 2010

Thank you for your reply.  My husband first stopped the Eligard shot after 3 years and his PSA was just under 1. He did require surgery to his bladder to cauterize blood vessels and I remember when he came home from the hospital he sank into deep fatigue.  At that time, his doctor said he could take a break from treatment or remain on it continuously. Because he had so much fatigue and we didn't know if the drug caused this symptom he stopped his treatment.  However, the fatigue never went away.  He did resume the treatments again after about 6 months -- In April 2018 the PSA was 6.3 and a 6-month shot was given to him in August 2018 --The shot was delayed because of hospitalization.  He was due to another shot in February but again it was delayed due to a severe bladder infection which resulted from a foley catheter.  The last test was on April 19, 2019, and it came back at 8.4.  

My concerns are that if he doesn't treat it cancer will be harder to control if the volume is allowed to increase.  In the past, his PSA level declined slowly and took very long to reach the lowest level.  It also seemed to rise more quickly.  I don't have all the number in front of me but I remember calculated the velocity after he stopped it and it seemed to double in less than 6 months.  I tried to look up the numbers again before I posted this message but the records were already archived on the test result site.

I wonder what level the PSA has to be before a patient has bone pain, or it compresses nerves in the spine? How high is it safe to allow PSA to rise before resuming treatment and isn't it just a gamble when you don't' know where the cancer is growing?  We have no way of knowing this because he can't even have an MRI --he has too much movement.  MRI's were taken in the past of his spine and all of them were compromised by movement.

Thank you for your reply--I am just trying to look out for him the best I can. 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

There is no correlation between PSA levels and bone pain or even formation of solid tumors that could compress nerves in the spine. Cases of very high levels of PSA in the hundreds are usually found in patients with bone metastases but metastatic cancer may exist at lower levels too which renders the PSA unpractical to judge the status of a patient. Only an image study followed by a biopsy of detected lesion can certify if cancer exists at that particular place.
The PSA serves to indicate that prostatic cells (benign and cancerous) are active and producing serum. In such regard, those that did prostatectomy would have no prostate in place and there for no PSA serum. However, those that did radiotherapy (your husband's) have still the gland in place with active cells that may produce PSA.
More over, there is no difference on the amounts of PSA produced by cancerous or benign cells. The cancerous ones are more active which supports the judgment that any increase relates to cancer but cells of high Gleason rates 4 and 5 (poorly differentiated) typically produce lesser PSA serum because they have lost the ability of acting as normal cells.

One should expect to feel pain if bone metastases exist at the spine but pain can be from many other causes too. Cancer in spine could also compress the joints causing pain and becoming dangerous as it could lead to paralysis. It is difficult to consider cancer in spine without a proper image. I wonder if PET scan is available to PCa patients with essential tremors. PET detects at cellular level and the image result does not suffer by tremors the patient may have/cause during the exam. You can inquire on the matter at the nuclear clinic where he did the treatment.

I wonder how much advanced is the Multiple Sclerosis in your husband. Is the neurologist still managing/overlooking your husband's case? He should help you in the decision for continuing or stopping the hormonal treatment. I do not know how far does LHRH antagonists (Firmagon) or LHRH agonists (Eligard, Lupron) affect or worsen MS conditions. These drugs create havoc at the pituitary causing disruption at the hypothalamus that regulates the homeostatic processes involving sleep, body temperature and weigh gain, etc. One knows that low testosterone can cause disability in MS patients but not worsen the MS condition. On the other end, MS can lead to bladder and incontinence issues (including permanent fatigue) which have been affecting your husband for years.

I wonder if the PSA results you comment above were done while under the Eligard influence. I think them to be true values from unmasked boold samples. Only a testosterone (T) blood test can judge the shot effectiveness. High PSA in low T would mean refractory of the drug. Addition means would be required. In any case, the control of PCa progress in hormonal treatments (ADT) can be done via several means. Eligard (LHRH agonist) is used to lower the testosterone amounts circulating in the body feeding the cancer but bicalutamide Casodex (antiandrogen) also manages to control the bandit by avoid those cells from absorbing the testosterone. This is an oral pill taken daily which probably may/could substitute the Eligard shot, if required. You need to consult his urologist to get details on the matter.

Please note that I am not a doctor so that you should take my opinions as reference only. I hope I could help you more.

Best wishes,

VGama

 

RADIATION HOPEFUL
Posts: 218
Joined: Dec 2010

Initial Diagnosis 11/2010  Gleason 9, PSA 59

Treatment: IGRT/IMRT with ADT 3 years continuous and then intermittent

June 2018 PSA 6.39

Treated with 6 months Lupron shot beginning Aug 2018

April 2019 PSA 8.4

My husband is fighting two horrible diseases - Progressive MS and Cancer.  The Progressive MS has left him bedridden and with other serious consequences.  The question I have to answer for both of us is whether or not to continue to treat his prostate cancer.  Getting to the doctor's office for a shot is quite an ordeal for both of us at this stage and puts him under more stress.  Whether or not further treatment is beneficial or adding burden is the second question.  I have difficulty dealing with no treatment for cancer because I feel it seals his fate for death from prostate cancer.  However, he could die from MS or complications.  

To make things easier for us, his doctor has suggested using Casodex 50mg with Metformin since the Lupron has to be given in the office.  I read some posts about the Casodex but nothing was found on this drug combination.

I also looked up information on Casodex's side effects --My biggest concern about this drug is regarding the effect to his liver--His ALP is already 142 (high) and I don't know why.  The other liver tests: ALT, AST are currently normal but had been elevated in the past--is this drug going to cause liver problems?  Does this combination have worse side effects?  He tolerated Lupron pretty well.  Would he be better off with no treatment --since, quality of life is also an issue.  We don't know how long he will live and of course, his quality of life is already compromised.  I have a hard time letting go as bad as things already are for both of us.  Any advice is appreciated. 

 

 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Hi again,

Please read my above post. I commented about Casodex which I think that it can substitute Lupron for the moment. If it fails you still got other drugs like Xtandi and Zytiga which are a more refined sort of antiandrogens. However, you should control the effects on cancer with testosterone tests added together with the PSA.
Metformin can also be added and  it will not prejudice the levels of ALT you commented above. In fact, doctors recommend Metformin to patients suffering from hepatitis that are in many cases related to diabetes. Surely his ALT levels are elevated (3, 4 times the normal levels) but the danger for liver damage is when ALT reaches 10 times the normal levels (normal= between 7 to 56 units per liter).

Famous PCa oncologists use metformin in their cocktail protocols treating prostate cancer patients. I think you should follow the instructions of his doctor but you can inquire on the issue with his doctor treating MS.

Details on Metformin in here;
https://www.webmd.com/drugs/2/drug-11285-7061/metformin-oral/metformin-oral/details

You may also participate in a forum dedicated to Multiple Sclerosis as this in here;
https://multiplesclerosis.net/forums/

Best of lucks.

VG

 

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