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prostate cancer DX January 2017 stage 4 metastatic

Chuckect's picture
Chuckect
Posts: 45
Joined: Jan 2018

 

well looks like it's comming up on January 2019 and average life according to the doc that i dropped was 2 !/2 years..  ****, am I running out of time.. iv'e had a round of chemo and xgeva, lupron and that ended fall of 2017 and my PSA went from 550 to 45.. 

the chemo was not as bad as I had been led to believe, but was not a walk in the park either.. Then after becoming upset with my onc at brown cancer center i went to norton cancer center for a second opinion and hoocked up with Doc  Res..  

so now i'm on zytiga, xgeva, lupron, oxy, zoloft, prednisone (i have one of those weekly pill dispenser).. It seems that my PSA is kind of up and down,, did jump to 70 one month then hung out at 20 or so and is now 14.5,, not bad.. I'm hoping that it goes lower as my testosterone is as low as it can go.. 

the only pain is in my shoulders and forearms,, a littls in my back and neck, and various tweeks here and there.. another thing that bothers me is the associated lymphodema,, and no mater what i do to get the swelling down it comes back the next day.. If anybody has any tricks i would love to  hear about it..

Thanx for taking the time to look at this dialog and any questions or comments would be appeciated..

Georges Calvez
Posts: 229
Joined: Sep 2018

Hi there,

I would say that you have a 100% chance of beating the two and a half years so congratulations for that.
After that it is very hard to say but things seem to be looking good, maybe you should send Doc 1 a Christmas card!
Patients seem to want an answer to the question, 'How long have I got Doc?' and some doctors cannot resist answering, I suppose that the fact he gave you an average is a point in his favour but prostate cancer is very unpredictable.
If you can keep it under control it will not be a problem and if it becomes castration resistant who knows how fast it will grow?

So best of luck mate!

Georges

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

Chuck,

I do not think so. Let January come to celebrate the fact and then take the time to inform the achievement to the doctor who told you on the 2 & 1/2 years life decree. You have beaten the odds and I hope you continue showing that you are not ready to give up.

Many guys here do not know details of your story but they should be informed that you are a polio survivor which consequences have troubled your management against the bandit. In fact your symptoms described above make me think that they may be related to what is known as post-polio syndrome (PPS) occurring years later. It is possible that your immune system has been affected at your young age and is showing some weakness as a result from the chemotherapy of 2017. You may recall our exchanged opinions when you inquire on the use of Xofigo (radium 223) in one of your past threads.

I wonder why you comment having lymphedema. Can you list the symptoms for your judgment and what you are doing?

Typically we experience swelling in arms and leg due to build up of fluid because of an existing blockage, leading to pain. Most of us PCa patients are at risk of this occurrence for the cancer treatments. I also experienced a mild swelling close to the ankles of my legs and managed to get it down by massaging the area and keeping the legs up when sited. I also used a cream at bed time named pentosan polysulfate sodium (gel).This is an anticoagulant (blood thinner) which will act under the skin also alleviating pain.

You cannot do extreme physical exercises for your wheelchair condition but you may try getting your lower legs up (or request someone to help you in that). This is not the first time you comment on this matter and I hope you find a way out.

I wonder if you have ever discussed the problem with your doctor. You could request a lymphoscintigraphy which is a scan that can detect blockages. Your lymphatic system may be in jeopardy. The pain you describe above should be investigated as it could signal a case of lymphoma.

I am sorry for my cautionary comments. I do not want to jeopardy this thread where we should be celebrating the lower levels of PSA. The last two years has been tuff but you have done it excellently with your multimodal approaches. From a 550 to a 14.5, … Just wonderful.

Congratulations.

I raise a glass of Portuguese red to the accomplishment.

Best wishes,

VGama

Your story in here; https://csn.cancer.org/node/315299

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