Hello i am writing this in desperate need of some help and options. This past weekend my father was outside with a customer when he suddenly collapsed to the ground because he couldn't feel or move anything from the waist down. We called an ambulance and when they arrived to the hospital did a bunch of testing MRI cat scan you name it. Came back that he had advanced prostate cancer that had spread to his lymph nodes and spine. His spine had a stroke as they call it and are saying he will never walk again. So much for me to take in as he is only 46 years old and a grandfather to my 2 children who are 1 and 3 years old. They at this point didn't give us many options other that some shots to the stomach wich at the moment I can't remember what it's called. But anyway has anyone ever dealt with anything similar and any ideas on where to start with such advanced and aggressive cancer I understand the end result is not very good I just feel so helpless at this point and I am doing everything I can to try and figure something out to help him.
Looking for help : Hello i am writing... - Advanced Prostate...
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I'm sorry for what your Father is going through. My Husband's story is a bit different but I hope this helps. His cancer spread to the 2 lymph nodes in pelvis. He's been having Firmagon (Degarelix) shots in the stomach alone with Zytiga. Thankfully his psa went from 8.7 to 0.1 in 2 months.
I think this could be the same shots that they're suggesting for your Father. If you can give more info on what his PSA is, I'm sure there's a lot of great guys in this forum that will be able to help you. I wish I can help you with more info. The best of luck for your Father. Stay strong for him.
Its a lot to take in, thankfully he has you to help navigate through what comes next. First is to get him to a medical oncologist dedicated to prostate cancer. In addition to the shots, they are likely to suggest chemo to help control it from spreading. Although its serious with his spinal cord injury, there are alot of treatment options that are likely to extend his time with you and the kids for longer than it may seem at first. Lots of good long term stage 4 survivors on this forum to provide hopeful inspiration.
you have to find out did your father have spinal compression or a PCa tumor pressing on the spinal nerves
They said a blood clot in his spine that did not allow blood to flow properly and caused the spinal cord to have a stroke. His psa is at 200 wich is extremely high we understand that but just gotta try to stay positive. They started him on firmagon shots yesterday wich is a hormone medication and they said they will try that for 4-5 weeks before possibly switching to zytega I believe it's called. Don't really understand y they aren't hitting it with something harder seeing that he has such aggressive and advanced cancer but I don't make the rules I guess. They also said they have never seen this in someone his age of 46 before
Sorry to read of your father's collapse and the partial diagnosis. Elsewhere on this site our brothers will be able to give you more help than me but....200 is high but 6000 is higher! I was @ 200 myself 4 years ago but for the past year have been @ 0.03. Now my 200 is like nothing. I pray you and your father and you Specialists are able to firm up on a diagnosis and start the correct treatment.
The Firmagon is an appropriate primary treatment for newly diagnosed metastatic prostate cancer that has already spread to bones and lymph nodes. The object is to reduce Testosterone to a very low level, which suppresses hormone sensitive prostate cancer cells, wherever they may be. That PSA of 200 may fall rapidly toward the single digits in a few months, depending on his cancer biology. (I had a PSA of 5,006 at initial diagnosis four years ago. A related drug, Lupron, took my PSA below 5.0 within three months, and as low as 1.0 during the first year of treatment.) It may also quickly quench some pain symptoms in areas where "mets" were formerly growing unchecked.
If/when your Father may start to have side effects, such as hot flashes, be patient and supportive with him. Don't be afraid to add a little humor to the mix. It may be good for the both of you.
With bone mets, and a future of low testosterone, you might also ask his doctors about taking either Zometa (zoledronic acid) IVs periodically, or Xgeva (denosumab) injections periodically, for optimal bone strength and health. See what they say.
A Nuclear Medicine Bone Scan and a "DEXA" bone density scan, if not already done, may prove helpful to establish baseline results for future comparison.
Likewise for a check of his Vitamin D3 level. A mid-level is supposedly better than a low or borderline low reading, when it comes to bone health.
With advanced metastatic disease, he will likely be on some type of Androgen Deprivation Therapy (ADT) "for life". If Zytiga is used, it will likely be "in addition to", rather than "instead of".
Recent Clinical Trial results have shown benefits for adding early Zytiga to ADT, and it is becoming one of the new standard of care options. See, for example:
am.asco.org/adt-plus-abirat...
His initial treatment Options sound pretty reasonable to me (I'm no doctor). Hope his spinal nerves problems settle down, and hopefully reverse with some expert physical/occupational therapy, and time to heal.
For the technically inclined, here's a link to more info about Zytiga. Remember, everyone is an individual, your Father's "mileage may vary".
zytiga.com/shared/product/z...
One day at a time.
Your Father is very blessed to have such a loving and concerned family.
Charles
Im sorry to hear about your dad my prayers are with you and him .. i had a psa of 219 and Lupron injections i really hope you find the right doctors ..
Hi Gus,
What is the difference between the two? I always assumed that spinal compression WAS a PCa tumour pressing on the spinal nerves. Not at all suggesting you are incorrect - I’m just interested to hear they may be a difference.
Thanks
J
It has nothing to do with PCa. Spinal Compression does occur in PCa patients, but that's due to the effects of the meds. You know "we're all different". Well, it's spot on in this situation. I have degenerative disc disease. What that means, I have no idea. I did have two mets on my spine, which are no longer appreciated. The point is, I think it's in our genes, whether we have good bones, or not.
J
I ve just confirmed I have Degenerated joint desease also.heredity is a big factor but I’m convinced that I’ve been propelled 20yrs ahead into geriatric diseases .
A lot of us feel these rapid declines. All part of survival. I once saw a t shirt with an old narley twisted old mans face and narled body ..below it stated...gettin old ain’t for pussies. ! That was 20 yrs ago , I was healthy but I saw the truth in it. Now it’s reality. I had hip bursitis for 2 or 3 months. Very painful .went to hip dr he said hips mild degeneration but the real problem is from L 5 down almost no disc left. That s rapid deteriation. you said its because of the meds . I agree100% . From ashes to ashes, dust to dust. We’re all going in the same direction. Back to dust.
Just, not too fast. Let's take our time.
Even the pope ducked when he was shot at. It’s in our dna to survive. No hurry to cross that river.
That s very frightening. So hard to comprehend how this APC can attack us. I’m sorry for this severity at such an early age.Ive heard of a young man of 16 having APC .Rare , as is at 46 I was 53 and they said very young also for my severity. Hopefully as in my case his age with help him to fight and get through treatments. It’s no cake walk for him or those close to him.Stripping us of the male hormone and in fact castrating us chemically. The challenge is to stay alive against a devious opponent. It is possible to live a long time, if you do all that you can now. Don’t dwell on bad stats or negative diagnosis from M.D.’s. We don’t have an experation dates stamped on us. He has at least 3 fantastic reasons to want to live ..You and your children. Love him much .Thats what’s needed by all of us,love and a lot of compassion .He’s lucky to have you .Hes still a young man.Not walking however is brutal, especially if they say “Never” .I pray he can get to a better place ,with limited suffering..Stay strong for him...Moral support is everything from here on out. Try to encourage him no matter what.
Thank you
It’s fortunate that you or your dad can get great answers here so that you can at least have some informed idea of what things meen and what to expect. I’m keeping the beast at bay , at least for now. I’m 3yrs down the road from diagnosis ..If I can get good results from treatments anyone can.
When my cancer metastesized I felt very weak and my blood pressure went way down. I found that whenever my blood pressure was low I felt faint. I am now on Chemo therapy which includes Docetaxel and Carboplatin and just recently had my 15th infusion. That seems to work along with ADT and prednisone. I recently added XGEVA which is for the PC in the bones.
A good Oncolgist who deals with prostate cancer preferably at a top center like MSK in NY or MDAnderson in Texas is the best start. Second he needs to have reason to go forward. A wonderful daughter like you and two great grandchildren are a place to start. Third he needs to realize that his world has changed and he has a new normal. This is not pleasant, the realization that you can't do all the things that you could just weeks ago but you can only do what you can do. I walk with a cane, I always thought that was for old people, I don't drive, never thought that would happen, I can't lift many things, etc. But I can play with the grandchildren, I can cook my breakfast and lunch, I can get dressed, etc. I can enjoy the life I have and while I fight the beast inside I can enjoy life as I did when I brought my son down the aisle at his wedding earlier this year.
Best wishes as your father fights the beast.
HI, I'm intrigued by your comments. I have recurrent pca, but it's been ok for 15+yrs on IADT3 until recent cycle when my psa has been slow to respond. After a year on ADT, my psa is still 0.6, after hanging up at 1.4.
Now, switching. Back in June I had a heart attack, we think, and I had triple bypass. 5 months later I was rebuilding ok until recently-my pulse has always been low and my pressure high, but nothing is working to get them back under control. Right now I have no energy, pulse in 40s resting, ONLY 64 on racquetball court! I see a kidney specialist tomorrow to learn if there might be some damage...from something!
Can you provide any references to pressure/pulse and prostate cancer or to your situation specifically? Other than refs that ADT can contribute to heart attacks I have never seen anything. Thanks.
Herb
I can only tell you what happened to me. In spring 2016 I was finished with Radiation and ADT when my PSA which was negligible rose a little. I then restarted ADT in July 2016. In August an MRI showed little and then in Nov 2016 I started to cough and feel weak, My local doctor gave me an XRay which showed something unusual on the lungs. I then went to my oncologist who gave me a CT scan which showed PC which had remained in my prostate had traveled through my lymph system to my liver, lungs and bones. The onc was at this time mainly concerned with the liver. My blood pressure which was normally 140/100 with pulse of 90 was now down to 100/50 with pulse around 50. When the pressure went lower then I was feeling very faint. I was then put on Chemo which included Docetaxel and Carboplatin. I believe the docetaxel was for the prostate cancer in general and the carboplatin was to aid the docetaxel in the soft tissue of the lungs and liver. My PSA shot up to 10, it would eventually reach a high of 24. Acid and alkaline phosphitase also shot up. I continued to feel miserable and I was unable to do many activities. The Chemo seemed to work during the winter of 2016/2017. The onc told me to stop the norvasc which was the blood pressure pill I had been on for a decade, also. My blood pressure gradually rose and I felt better. My blood pressure was last 120/80, and the CT and bone scans stable so I consider I am doing well. I just had my 15th Chemo infusion. I have had no heart or kidney problems. If anything the cancer going to the liver is what caused my blood pressure issues. They have also been testing my thyroid although nothing has been found there they still sent me for an ultra sound last week. I have not seen those results.
Best wishes to you, hope my story helps.
Prayers and Hugs! As everyone here has said. It is scary but there is much to hope for. There are a lot of treatments for Prostate Cancer. Your Dad is still a young guy. Be there for him and encourage him.. Lots of diet changes you can help with, that will help him feel better and get him through the treatments. We are here for you!
Hullj48,
You're come to the right place for info. Get a good oncologist for your Father asap.
Good Luck and Good Health.
j-o-h-n Wednesday 11/15/2017 5:44 PM EST
BTW where are you located?
He will most likely have a good respose to the shot in the stomach , which is likely zolodex to reduce testosterone. I was dxed as stage 4 , bpsa 148 with widespread bone and lymph mets at age 49 in 2006, I am 61 now. I am very sorry to hear of the Spinal stroke, and I will pray he will become mobile again, The long white coats can be wrong you know. I feel confident the cancer will be controlled for a good long while, and please know there are many new treatments available to us now as opposed to just 10 years ago, and lots new coming in the near future. I knew Men who were dxed at 41 yrs and even on this list a number of Men in their 40s. I wish you and your Dad the best! Keep us posted
Dan
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