Been a while - update on my dad

tiffany2015

Hi all,

It has been some time since I have posted about my dad's prostate cancer.  I have some new questions and will update everyone as it has been a while.  He was diagnosed beginning of June with stage 4 metastatic prostate cancer, gleason score of 10.  Cancer spread to liver, pelvic lymph nodes, chest lymph nodes and lungs.  He began Taxotere 3rd week in June and was handling it pretty well, but the side effects were getting severe (losing vision, neuropathy, weight loss, and numerous other things).  January 11th he was supposed to go in for chemo but while meeting with the Oncologist he was told there would be no more Taxotere.  It appeared that the Taxotere had slowed the progression some but the doctor said the side effects were becoming too severe.  So, he is now on just HT. She stated that his last two options are Zytiga and Jetvana.  In december they discovered a blockage in his heart.  He had triple bypass four years ago and the cardiologist stated they were going to try and resolve the blockage with medicine.  For the past two months he has developed severe swelling in his legs, to the point of hurting to walk or be touched on his legs. They keep giving him water pills and nothing seems to be helping.  He goes again on March 11th for new scans and we are all frightened to see what results are as the doctor kept telling us its aggressive cancer and his chemo (his life line as he calls it) was stopped.  Has anyone experience the leg swelling and if so, any ideas on what it could be?  The doctor mentioned doing scans on his heart and from things I have read (nothing like the internet scaring you) the swelling could be due to heart failure, liver failure, ascites, cellutis to name a few. 

Thank you in advance!

Max Former Hodgkins Stage 3

Dad

Tiffany,

I'm glad your dad is hanging on.  I have written elsewhere more than once about two drugs you mentioned, Jevtana and Zytiga. I do not recall right off which posts those were or when (I apologize if I previously discussed them with you yourself).

Both are primarily post-Taxotere drugs, but when they are employed by oncologists is pretty open to the doctor's judgement now.  Zytiga is a pill, Jevtana is an IV. Jevtana is a fairly "conventional" chemo for Taxotere-resistant, metastatic disease, the Zytiga is essentially an end-stage HT, for after most other HT and Taxotere have failed.  Zytiga is usually given first following failure of Taxotere or similiar chemo, and Jevtana after ZYtiga fails.  Both are regarded as pretty effective, and extend life expectancy by various amounts.

I learned abut them when a friend was on them; he ran the course with both.  I recall that Jevatana caused him severe, untreatable bowel issues.  Both cause severe fatigue and weakness, loss of appetite, weight loss in many patients (side-effects vary by individual, of course).

Legs swollen from fluid retention can be a lot of things. Congestive heart failure is one of the most common, but kidney and liver issues can do this also. I take diuretics for this myself.   Circulatory issues in the legs themselves can also do this.  It is just something the doctor would have to do various test for the determine.  With his heart issues, my first layman's suspicion would be the heart however.

I hope this helps. I am linking data on the other two drugs again. I do recall that on Zytiga drug Gary did better than on the Jevtana, as regards side-effects.  Both are t aken with Prednisone, which increases appetite and energy some in most patients, but Gary was so far gone that he could not walk and mostly slept. Both are a buy for time, but neither is curative for PCa, just as Taxotere is not curative for PCa (it is curative for some other forms of cancer, but not PCa).   I have heard of it being used in less seriously ill patients with with HT or other treatments toward curative effect, but this is uncommon.

Bless you two and thank you for soliciting imput from the board again,

max

http://chemocare.com/chemotherapy/drug-info/zytiga.aspx

http://chemocare.com/chemotherapy/drug-info/Jevtana.aspx

 

tiffany2015

Max Former Hodgkins Stage 3 said:

Dad

Tiffany,

I'm glad your dad is hanging on.  I have written elsewhere more than once about two drugs you mentioned, Jevtana and Zytiga. I do not recall right off which posts those were or when (I apologize if I previously discussed them with you yourself).

Both are primarily post-Taxotere drugs, but when they are employed by oncologists is pretty open to the doctor's judgement now.  Zytiga is a pill, Jevtana is an IV. Jevtana is a fairly "conventional" chemo for Taxotere-resistant, metastatic disease, the Zytiga is essentially an end-stage HT, for after most other HT and Taxotere have failed.  Zytiga is usually given first following failure of Taxotere or similiar chemo, and Jevtana after ZYtiga fails.  Both are regarded as pretty effective, and extend life expectancy by various amounts.

I learned abut them when a friend was on them; he ran the course with both.  I recall that Jevatana caused him severe, untreatable bowel issues.  Both cause severe fatigue and weakness, loss of appetite, weight loss in many patients (side-effects vary by individual, of course).

Legs swollen from fluid retention can be a lot of things. Congestive heart failure is one of the most common, but kidney and liver issues can do this also. I take diuretics for this myself.   Circulatory issues in the legs themselves can also do this.  It is just something the doctor would have to do various test for the determine.  With his heart issues, my first layman's suspicion would be the heart however.

I hope this helps. I am linking data on the other two drugs again. I do recall that on Zytiga drug Gary did better than on the Jevtana, as regards side-effects.  Both are t aken with Prednisone, which increases appetite and energy some in most patients, but Gary was so far gone that he could not walk and mostly slept. Both are a buy for time, but neither is curative for PCa, just as Taxotere is not curative for PCa (it is curative for some other forms of cancer, but not PCa).   I have heard of it being used in less seriously ill patients with with HT or other treatments toward curative effect, but this is uncommon.

Bless you two and thank you for soliciting imput from the board again,

max

http://chemocare.com/chemotherapy/drug-info/zytiga.aspx

http://chemocare.com/chemotherapy/drug-info/Jevtana.aspx

 

Thank you Max for the

Thank you Max for the information and input. It is greatly appreciated!  I did some research and from what the doctor told us zytiga would be first then jetvana.  The doctor said a lot of patients had success with the two drugs (well success of giving you a little longer time).  I am leaning with you as well regarding the swelling being due to heart issues, but it is hard to get my dad to call the doctor and have them run tests.  He says hes going to live 10 years and I dont have the heart to tell him the data and information suggests otherwise.  I want him to stay as upbeat as possible but in the same sense I want him to be realistic.  As his daughter it just breaks my heart.  God bless you!

Max Former Hodgkins Stage 3

tiffany2015 said:

Thank you Max for the

Thank you Max for the information and input. It is greatly appreciated!  I did some research and from what the doctor told us zytiga would be first then jetvana.  The doctor said a lot of patients had success with the two drugs (well success of giving you a little longer time).  I am leaning with you as well regarding the swelling being due to heart issues, but it is hard to get my dad to call the doctor and have them run tests.  He says hes going to live 10 years and I dont have the heart to tell him the data and information suggests otherwise.  I want him to stay as upbeat as possible but in the same sense I want him to be realistic.  As his daughter it just breaks my heart.  God bless you!

Numbers

Tiffany,

With a Gleason of 10, and metastatic involvement in numerous critical organs, your dad's long term prognosis is undoubtely not good.

But from what I have read, these two drugs may give him significantly more time. It varies by individaul, but is most likely worth it. I would use them myself if I ever have the need, but "giving up" is not something I am ever willing to do.   But the Budweiser Beer commercial has insight as well, when it says , "Know When to Say When."

Again, blessing to you both,

max

.

Rakendra

Max Former Hodgkins Stage 3 said:

Numbers

Tiffany,

With a Gleason of 10, and metastatic involvement in numerous critical organs, your dad's long term prognosis is undoubtely not good.

But from what I have read, these two drugs may give him significantly more time. It varies by individaul, but is most likely worth it. I would use them myself if I ever have the need, but "giving up" is not something I am ever willing to do.   But the Budweiser Beer commercial has insight as well, when it says , "Know When to Say When."

Again, blessing to you both,

max

.

treatment

I think this is a valuable post for the board.  It shows one course of action - to do anything possible to extend life.

"well success of giving you a little longer time" -yes, exactly,  I have read that Jevtana may give four months more, but there is a price in side effects and loss of quality of life.  Everyone has to decide. " He says hes going to live 10 years and I dont have the heart to tell him the data and information suggests otherwise.  I want him to stay as upbeat as possible but in the same sense I want him to be realistic."  Do you REALLY think you have the right to make that decision for him?  Is this about YOU and YOUR life or is this about HIM and his life?  My suggestion is to reconsider your position.  Is it YOUR right to make decisions about his life or does he need to be told everything so that he can decide about his own life.  Be careful here about making decions that you may regret for the rest of your life. Love, Swami

  

VascodaGama

A long period to be with the family

Tiffany

I am sorry for the news. Max provided you with the details you've lookng for. The swelling could also be a direct cause from the chemo. Probably his oncologist can explain on the treatment side effects and provide some sort of medication to solve the swelling issue.

You can read more on the matter in this article; www.cancer.gov/publications/patient-education/swelling.pdf

He is young and I admire his atitude in believing he will live ten years more. The number is not important but the wish for a long period to be with you, your brother and your child.

Best wishes for improvement.  

Your story is here; https://csn.cancer.org/node/294778

Vgama

 

 

tiffany2015

Max Former Hodgkins Stage 3 said:

Numbers

Tiffany,

With a Gleason of 10, and metastatic involvement in numerous critical organs, your dad's long term prognosis is undoubtely not good.

But from what I have read, these two drugs may give him significantly more time. It varies by individaul, but is most likely worth it. I would use them myself if I ever have the need, but "giving up" is not something I am ever willing to do.   But the Budweiser Beer commercial has insight as well, when it says , "Know When to Say When."

Again, blessing to you both,

max

.

Thank you Max! At this point

Thank you Max!
At this point he is willing to do whatever the doctor suggests and we are all supportive of his descisions as they are all ultimately his decisions.  And you are exactly right "Know when to say When!"

Bless you as well!

tiffany2015

Rakendra said:

treatment

I think this is a valuable post for the board.  It shows one course of action - to do anything possible to extend life.

"well success of giving you a little longer time" -yes, exactly,  I have read that Jevtana may give four months more, but there is a price in side effects and loss of quality of life.  Everyone has to decide. " He says hes going to live 10 years and I dont have the heart to tell him the data and information suggests otherwise.  I want him to stay as upbeat as possible but in the same sense I want him to be realistic."  Do you REALLY think you have the right to make that decision for him?  Is this about YOU and YOUR life or is this about HIM and his life?  My suggestion is to reconsider your position.  Is it YOUR right to make decisions about his life or does he need to be told everything so that he can decide about his own life.  Be careful here about making decions that you may regret for the rest of your life. Love, Swami

  

treatment

He is being told everything and I even present him with the information I have found.  My father depends on me to ask questions from research I have done or from talking with you all on this board (which has been a huge help and I am soo appreciative of)!!  The doctor has told him he doesnt have 10 years and he says he understands that.  What I meant by that statement was that he tells people that we encounter or friends of our family and family members that he is going to live 10 years.  I just happen to choose not to tell them other wise as I do not feel like it is my place nor do I want to take that from him.  If he helps him to say that to others when he knows the reality then who am I to tell people different.  This is 100% about him and his life.  All I want him to have is a great quality of life for the time he is here.  I do not want him to suffer.  I show him research, I show him results from clinical trials on metastatice prostate cancer, I have even suggested he join this group.  I can only present him with what I know and ensure that he understands what the doctors are telling him.  From there it is his choice how he moves forward.  Thank you for all your advice and information Swami! 

Love,

Tiffany

tiffany2015

VascodaGama said:

A long period to be with the family

Tiffany

I am sorry for the news. Max provided you with the details you've lookng for. The swelling could also be a direct cause from the chemo. Probably his oncologist can explain on the treatment side effects and provide some sort of medication to solve the swelling issue.

You can read more on the matter in this article; www.cancer.gov/publications/patient-education/swelling.pdf

He is young and I admire his atitude in believing he will live ten years more. The number is not important but the wish for a long period to be with you, your brother and your child.

Best wishes for improvement.  

Your story is here; https://csn.cancer.org/node/294778

Vgama

 

 

A long period

Hi Vgama,
He actually went for an echo last week and we wil be given results on that Friday along with the results from the new scan they are doing this week.  So, we should know more then. We all want him to live as long as he can.  I told my father in the very beginning if there comes a time that he doesnt feel he can go through this (chemo, HT, etc) anymore and chooses not to take any treatment I will still continue to be there for him and support him.  His quality of his life is so much more important to us than his quantity. 

Bless you!

Rakendra

tiffany2015 said:

A long period

Hi Vgama,
He actually went for an echo last week and we wil be given results on that Friday along with the results from the new scan they are doing this week.  So, we should know more then. We all want him to live as long as he can.  I told my father in the very beginning if there comes a time that he doesnt feel he can go through this (chemo, HT, etc) anymore and chooses not to take any treatment I will still continue to be there for him and support him.  His quality of his life is so much more important to us than his quantity. 

Bless you!

good luck

      As you know, there is no  telling about the future with this disease.  Max was given up long ago; my bone cancer could not be more extensive.  Just make every moment count.  And most do not understand death.  Actually, many are already dead in life but go on breathing, eating, and living.  Often people who are told they are dying only really live in this short time.  They learn what life and death are really about.  Death is a transition only; the abandoning of the worn out body.  Death is not something that is happening in the future; it is something that is happening in every moment, that is why those who celebrate ALL of life also can celebrate death.

It is all about "what is".  Celebrate ALL "what is" and life is love and joy.  Resist "what is" and the only result possible is suffering.  love,swami rakendra