Stage 4

jullo234

I believe I last wrote about 4 months ago. My partner diagnosed with Stage 4 cancer in August/16. He finished his taxotere in Dec. Three days later he was rushed to the hospital for quintuple heart bypass surgery . He was in the hospital for two weeks. After he got out about a week later he got a gum infection and was on antibiotics for close to two months. He had a terrible time sleeping with the pain from his jaw constantly waking him up. He worries he could become dependant on pills.

Yesterday we went to the doc and they said everything looking good , PSA 1.64 other tests are in normal range. At one time his PSA had been over 30.

He now gets an XGeva Shot and a Lupron shot once a month. 

Sometimes he breaks down and tells me he isnt sure how much more he can take but for the most part remains very positive and never complains. 

I guess my question is I wonder what is next , Does no one really know? I see that the hormone shots are making him emotionally vulnerable and he yearns to be back to who he once was. However for the most part he is out doing things all day long and by 8 is ready to go to bed. Can I expect to see him get better and stronger or is that just a pipe dream. Do men recover from Stage 4 /taxotere and go back to leading somewhat normal lives? Does the hormone shot every month take away a mans desire to have sex forever? Of course the quintuple heart bypass on top of the cancer was such a double whammy and I know I could not have  handled such a situation as well as him. 

Thank you 

J

VascodaGama

".... What is next?"

Julia,

Welcome back. You can read our exchanged discussions in your initial thread in here;
https://csn.cancer.org/node/305810

First I want to congratulate him for the achievement in reducing the PSA. His recovery from the chemo blow also seems to be on track, according to his doctor's comment, apart from the recovery of his fifth heart bypass.
I believe that his present experience regarding the emotional vulnerability, fatigue and general discomfort is due to the hormonal treatment (Lupron) and Xgeva (Denosumab). Lupron makes him to be in chemical castration (no testosterone in circulation) and such causes those emotional effects, no libido and fatigue. Going to bed earlier or even having an afternoon nap is recommended. He will need a fitness program to creat muscle. Xgeva also causes side effects, and I would be cautious in regards to your comment that he "... got gum infection and ... pain in jaw...", as this drug (Denosumab) is linked with osteonecrosis of the jaw. The condition makes it difficult any tooth repair or gum recovery. I wonder if his doctor is aware of his trouble in the jaw, as well as about his heart issues.

Another aspect I would call your attention to, regards the vast list of supplements, you told us before, he is taking. Many of these interact with Xgeva (they use the same pathway for metabolism) which could lead to a series of other events. Please inform his oncologist on these details.

I recall him being of my age (67) and surely at our age, even if we feel young our bodies do not respond as when we were 60. One needs to learn to accept what the body is telling. The lack of sex drive makes part of the medication but it also depends on men's age. Our wives are our best partners in those lovely nights, however, much understanding is required. Things will take a different stand and we need to adapt.

Best wishes for continuing recovery.

VGama

jullo234

VascodaGama said:

".... What is next?"

Julia,

Welcome back. You can read our exchanged discussions in your initial thread in here;
https://csn.cancer.org/node/305810

First I want to congratulate him for the achievement in reducing the PSA. His recovery from the chemo blow also seems to be on track, according to his doctor's comment, apart from the recovery of his fifth heart bypass.
I believe that his present experience regarding the emotional vulnerability, fatigue and general discomfort is due to the hormonal treatment (Lupron) and Xgeva (Denosumab). Lupron makes him to be in chemical castration (no testosterone in circulation) and such causes those emotional effects, no libido and fatigue. Going to bed earlier or even having an afternoon nap is recommended. He will need a fitness program to creat muscle. Xgeva also causes side effects, and I would be cautious in regards to your comment that he "... got gum infection and ... pain in jaw...", as this drug (Denosumab) is linked with osteonecrosis of the jaw. The condition makes it difficult any tooth repair or gum recovery. I wonder if his doctor is aware of his trouble in the jaw, as well as about his heart issues.

Another aspect I would call your attention to, regards the vast list of supplements, you told us before, he is taking. Many of these interact with Xgeva (they use the same pathway for metabolism) which could lead to a series of other events. Please inform his oncologist on these details.

I recall him being of my age (67) and surely at our age, even if we feel young our bodies do not respond as when we were 60. One needs to learn to accept what the body is telling. The lack of sex drive makes part of the medication but it also depends on men's age. Our wives are our best partners in those lovely nights, however, much understanding is required. Things will take a different stand and we need to adapt.

Best wishes for continuing recovery.

VGama

VGama,

VGama,

As always thank you for your informative and thoughtful response.  Tom had a quintuple heart bypass in Dec. I always wonder how this is possible as all doctors are supposedly communicating with each other , heart dr , cancer dr, PCP. Tom has history of heart problems with one brother dying of a heart attack at age of 33 while doing a stress test ( they didnt have paddles to resucitate in office). My point being wouldnt they have done very specific tests before starting the taxotere as taxotere has been written up as a drug that can damage heart. Of course noone says that the two are linked and maybe there s no point in knowing. He got the green light from his Dr, regarding his heart just before he started chemo. I will always wonder if the taxotere triggered it.

All Dr's are aware of his supplements and medications.  He reallly never took very many because the oncologist discouraged them. He has done exactly what the Dr s have told him. The jaw problem started in Jan. They found an infection and put him on a course of antibiotics. They did this three times with the last antibiotic being a strong one. They ( dentist) tell him that the infecction is gone but he tells me that he is awakened  still by the pain in his jaw. This in one tough man who has seen battle in Vietnam and for him to say that the pain causes him to cry is very worrisome , because he has a very high pain tolerance. The cancer Dr knows about his jaw problem , why would they not mention the link to osteonecrosis? Perhaps they just dont know?

Really I just try to find info that is most helpful and truthfully I dont know that much. I backed away from the whole alternative piece when I saw that it stressed him out and he wanted to do what Dr's recommended.

Thank you so much for the info regarding Xgeva.

Julia

 

 

 

 

Max Former Hodgkins Stage 3

jullo234 said:

VGama,

VGama,

As always thank you for your informative and thoughtful response.  Tom had a quintuple heart bypass in Dec. I always wonder how this is possible as all doctors are supposedly communicating with each other , heart dr , cancer dr, PCP. Tom has history of heart problems with one brother dying of a heart attack at age of 33 while doing a stress test ( they didnt have paddles to resucitate in office). My point being wouldnt they have done very specific tests before starting the taxotere as taxotere has been written up as a drug that can damage heart. Of course noone says that the two are linked and maybe there s no point in knowing. He got the green light from his Dr, regarding his heart just before he started chemo. I will always wonder if the taxotere triggered it.

All Dr's are aware of his supplements and medications.  He reallly never took very many because the oncologist discouraged them. He has done exactly what the Dr s have told him. The jaw problem started in Jan. They found an infection and put him on a course of antibiotics. They did this three times with the last antibiotic being a strong one. They ( dentist) tell him that the infecction is gone but he tells me that he is awakened  still by the pain in his jaw. This in one tough man who has seen battle in Vietnam and for him to say that the pain causes him to cry is very worrisome , because he has a very high pain tolerance. The cancer Dr knows about his jaw problem , why would they not mention the link to osteonecrosis? Perhaps they just dont know?

Really I just try to find info that is most helpful and truthfully I dont know that much. I backed away from the whole alternative piece when I saw that it stressed him out and he wanted to do what Dr's recommended.

Thank you so much for the info regarding Xgeva.

Julia

 

 

 

 

Partner

The story of your partner's medical troubles is remarkable.

He is beset with many comorbidities, a term doctors use for serious conditions unrelated or minimally related to one another, all of which can kill.

Doctors perscribe any medication, from Advil to Taxotere, with the following presumption (usually written out on perscription data sheets):  "This medication is given because its likely benefits probably exceed its possible side-effects."  It is quite possible, or even likely, that the doctors knew that they could give him Taxotere now, and likely push down his PSA and improve his short-term wellness, or simply let him die soon instead.  Taxotere does not have strong linkage to heart problems, but again, virtually any medication is linked to a hundred possible problems, even Asprin.  It is a judgement call.  A quad bypass suggests massive coranary blockages, not something I would think ANY med could induce, in a short amount of time.  His gum disease is more likely linked to heart issues than chemo is.

As a sailor for many years, I know that when a ship is sinking, the captian does not tell men to mop the floor.  The doctors are scrambling to make him as well as possible with what tools they have.  There will not be perfect communication is such situations.

Like Vasco, I will say that it is very encouraging, short-term, that his PSA has dropped so nicely. Never having used HT myself, I cannot comment on his emotional trials, which surely are reasonable and distressing.

max

Old Salt

Yes, that's tough

I doubt that your lives will ever be the same, but there is hope after the double whammy.

First of all, and I know this is hard, there's no use looking back. As Max wrote, the quintuple bypass surgery indicates that there were a lot of blockages. Death due to a major heart attack was lurking right around the corner for your partner. The good news is that the bypasses should make his heart function a lot better. As a quadruple bypass guy (16+ years ago), I do have some experience with that branch of medicine. In that context, it's well known that such major surgery with several hours of narcosis may change behaviors, even in the absence of hormone therapy.

Typically, a cardiac rehab program is recommended to recover from cardiac bypass surgery. I did that for several years and highly recommend it. I went from barely able to go up a few steps to walking faster than most people my age. A cardiac rehab program also includes strength training. The latter is also recommended for patients on hormone therapy, so that is a double positive.

Your partner's desire for sex will be very low for as long as he is on hormone therapy. As Vasco already wrote, couples should try to accommodate that in some loving way.

I am of course very happy for both of you with the positive response to the taxotere.

PS: Osteonecrosis of the jaw can be caused by bisphosphonates, but since Tom didn't get those, that association seems highly unlikely.  

VascodaGama

Old Salt; Risk for Osteonecrosis of the Jaw

Old Salt,

You usually are correct in your posts and I would truth your above comments but the results from clinical trials (III) on Denosumab against bisphosphonates shows that Denosumab (Xgeva, Prolia) has higher cases of osteonecrosis of the Jaw than the bisphosphonate zoledronic acid (Zometa). I think that the OJ risk is small in both treatments but it could have significance in a symptomatic patient like Tom. In this link they provide a summary of the phase III trial;

https://www.lexi.com/individuals/dentistry/newsletters.jsp?id=june_11

Best,

VG

jullo234

I wonder how the diagnosis of

I wonder how the diagnosis of OJ is made and by whom? Is it made by the dentist or oral surgeon?

I think a lot of Toms mood has to be the onslaught of problems, he has believed that he will fully recover now I see doubt lurking in his mind.  I'm 20 years younger and don't live with him, however we had five years of adventure together and I just want to do anything I can to help. It is true that I lean towards a more holistic approach but his children did not want him to go that route . Maybe the traditional approach is the answer but surely boosting the immune system to better handle these chemicals can't be a bad thing .

 

VascodaGama

Medicine and dentistry degree are required

Your question is intriguing as it depends in the country where you live. In Europe, both specialists, the dentist and the oral surgeon know how to diagnose OJ, however, only the surgeon (who has a degree in medicine and dentistry) can treat OJ issues.

My wife was diagnosed with OJ by her dentist one year ago. She needs bone restructuring at the jaw but due to the high loss (osteoporosis grade) it may be futile to get bone replacement (done by a surgeon) for staking loosed tooth. All she can do is to prevent further deterioration avoiding bone loss via diet and physical exercises. Mouth hygiene is very important to avoid infection that would also affect the OJ issues. Unfortunately she was late in knowing about this risk caused by her continuous use of Fosamax (bisphosphanate) since menaupose. She now takes a lower dose intermittently with long OFF drug periods. Her smile is still nice but with some dark spots.

Regarding the above comments on the OJ issue by survivors, you must understand that we here are not doctors. Our recommendations are solo based on own experience or on researches we come across along the years as continuing patients.

VG 

jullo234

I understand you are not

I understand you are not doctors just very well informed.

This site has provided me with information I could not find elsewhere and for that I am most appreciative .

RobLee

VascodaGama said:

Old Salt; Risk for Osteonecrosis of the Jaw

Old Salt,

You usually are correct in your posts and I would truth your above comments but the results from clinical trials (III) on Denosumab against bisphosphonates shows that Denosumab (Xgeva, Prolia) has higher cases of osteonecrosis of the Jaw than the bisphosphonate zoledronic acid (Zometa). I think that the OJ risk is small in both treatments but it could have significance in a symptomatic patient like Tom. In this link they provide a summary of the phase III trial;

https://www.lexi.com/individuals/dentistry/newsletters.jsp?id=june_11

Best,

VG

Risk for Osteonecrosis of the Jaw

I recently started a thread about Prolia and following a reply from you VG I commented that I had decided to decline the Prolia shot. Coincidentally, I saw my dentist this past week for my semi-annual cleaning and mentioned the Prolia decision to the hygenist cleaning my teeth. She gave me a big, big "good for you" and explained that her father had experienced necrosis of the jaw after receiving Prolia as part of his stage 4 PCa treatment. Furthermore, the final post in my thread was from someone who had an even darker tale to tell.

Case closed as far as I'm concerned. I don't know if Zometa is any better as far as SE's go, but for now I am willing to live with the risk of bone loss unless there is evidence that one of those treatments is superior.

Old Salt

VascodaGama said:

Old Salt; Risk for Osteonecrosis of the Jaw

Old Salt,

You usually are correct in your posts and I would truth your above comments but the results from clinical trials (III) on Denosumab against bisphosphonates shows that Denosumab (Xgeva, Prolia) has higher cases of osteonecrosis of the Jaw than the bisphosphonate zoledronic acid (Zometa). I think that the OJ risk is small in both treatments but it could have significance in a symptomatic patient like Tom. In this link they provide a summary of the phase III trial;

https://www.lexi.com/individuals/dentistry/newsletters.jsp?id=june_11

Best,

VG

Thanks Vasco

For setting the record straight. Good info

Old Salt

jullo234 said:

I understand you are not

I understand you are not doctors just very well informed.

This site has provided me with information I could not find elsewhere and for that I am most appreciative .

Follow up on cardiac surgeries

Just wanted to mention that a patient discharged from cardiac surgery typically gets orders to take certain drugs to minimize further cardiac problems. It is very important that the patient follows up and takes the medications as prescribed UNLESS there are serious issues such as interactions with the drugs associated with the prostate cancer therapy.

A recent study published in the medical literature indicates that many cardiac patients do not follow up long-term.

jullo234

Jaw

So now it is October and the jaw issues have never gone away but only gotten worse.

My question is , does any Dr. have the answers or diagnosis ?

Oral surgeons at VA in Boston said wait and see .

now he's starting to slowly unwind from lack of sleep and pain.

is there a Dr in the US that knowns how to treat this problem - more infection 

and now exposed bone?  No Dr here seems to have any answer and he is now 

beginning to lose hope . 

As always , thank you .

julia

VascodaGama

Neurosurgery

Julia

I am sorry for the condition. You may want discussing the problem with a neuro surgeon. If the pain has became unberable that he can not sleep, etc, then he needs some drastic measures such as cutting the nerve or part of it in the jaw. Surely this will affect the way he feels when eating. He may lose sensation on the temperature of the food.

Research the field in neurosurgery.

Best wishes.

VG

jullo234

I will do so. Thank you for

I will do so. Thank you for responding .

Julia