I am a 68 (minus 4 days) male. Was relatively healthy until about a month or two ago. Had just Hashimoto's, which was under control with Levothyroxin (100ug) and Cytomel. I went for a physical two weeks ago and my PCP called me the same day to tell me that she wants the blood test repeated the next day because of some worrisome markers. The next day I was told I have advanced metastatic prostate cancer that has spread to the bones. My PSA was 211 and the Alcaline phosphatase 1100. I had biopsy last week, a whole body and bone CT scan, which showed that the cancer has spread all over my body, even to the chest and scull. Yesterday I saw an oncologist who said I still have a fighting chance with a combination of chemotherapy (Taxotere) and hormonal therapy (Lupron). They still have to schedule the procedures, probably for next week. She put me on bicalutamide (50MG), which I haven't started yet. My sleep has always been poor but lately, even before the diagnosis, has become very fragmented. I sleep in 1-2 hours intervals. I do get about 6-7 hours of sleep total, but not enough deep sleep. I also feel some digestive discomfort in my stomach, especially when it is empty. I noticed I lost about 6-7 pounds without dieting over the last month or so. I looked at the side effects of Taxotere and they look quite scary. I am wondering if my apnea is a risk factor for this medication, because it has "difficulty breathing" side effect. I am less worried about the Lupron, maybe because I know very little about it. I am trying to find out if I need a second opinion, especially about the treatment, since I think the diagnosis is pretty clear. Still waiting for some imaging results from the CT scan. Feeling pretty let down, since this condition is developing very rapidly. It could have been caught in July (my previous PCP retired in October last year), when my PSA was not measured but the Alcaline phosphatase (107) was more than twice as high as the previous measurement in January. Any advice will be appreciated. Thank you for reading thus far.
First time on this forum, hoping to c... - Advanced Prostate...
First time on this forum, hoping to connect with people with similar experience
So sorry to hear about your diagnosis, but you'll find many here that have similar and have lived quite a while despite that. Glad you found this group. You will get all a lot of help, support and good advice here so stay tuned. We are all brothers here.
I had a similar diagnosis at stage 4 in early 2017. I'm coming up on 5 years next month. Don't be afraid of Taxotere, It's proven to add to overall suvrival in more than one clinical trial. I did it so I can also speak from experience. At first I said no, but then after reading about and looking at posts here, I changed my mind and did it. So glad I did. It was not that bad and it really helped me to feel like I was actively fighting the cancer.
Recently, there has been a trial called PEACE 1 that has demonstrated that adding Taxotere chemotherapy PLUS Abiraterone to ADT is the best combination for overall survival. The median overall survival in that trial is over 5 years now. That's the first combination to exceed 5 years.
I would ask your doctor about it and would really recommend not being afraid of chemo, it's done in 18 weeks and it's tolerable for most. I have zero regrets and would do it again.
Thank you very much for your support and the info about new drugs. I will definitely mention this to my oncologist. Is Abirateron newer than Lupron?
Lupron is quite a bit older than Abiraterone. Lupron was first approved in 1985. Abiraterone was approved in 2011.
This link has some info about chemo for a real expert in PC:
grandroundsinurology.com/dr...
Gregg gave you info about the PEACE-1 treatment which has shown to prolong life and it may be the most adequate in your situation.
Discuss about having a biopsy to study the genome of the metastases since the cancer may have mutations which make the cancer to respond to drugs such olaparib, rucaparib, keytruda and others being used in clinical trials.
There are many possibilities of future treatments if necessary after the Lupron and chemo. You will have to remain in Lupron or similar all the time.
What a bolt of lightning striking out of nowhere! So sorry. This is a very good place to come to. You're already getting great support & encouragement & even practical advice / suggestions. May you get the medical treatments that will keep you going for a long, long time. Blessings.
Thank you for your support. Lyubov is a slavic word for love. A long time ago I had a crush on a girl in our middle-school class with the same name. Hope you are not offended for my mentioning this.
Welcome. I know this all looks scary but don't give up. Abiratorone is a good start. It should begin to reverse some advances of your cancer. I know that is a scary word, but you have lots of company here. We are to help each other.
Thank you for the info and support. Abiratorone is reelatively new, isn't it? my oncologist will put me on Lupron and Docetetaxil. How long have yo had the cancer? Good luck with your treatment!
Abiraterone is not that new. *_lutamide ( enza , apa, dera ect) are the newer 2nd gens.
People usually get the doublet: adt + docetaxel or adt+ 2nd gen. But you can ask your doctor about triplet adt+docetaxel+2nd gen if you want.
At this point I wouldn’t worry too much about the side effects, there are ways to manage those by a variety of different methods. Different treatments have different toxicities and your dr will choose the right ones for you and manage your side effects as/if they show up.
Abiratorone is about 12 years old. I was diagnosed 29 years ago, stage four out of the gate.
A few things I would suggest to you. I turned vegetarian a few days after diagnosis. Also, keep up your vitamin D3 level with a supplement. Cancer patients have a low D3 level. There are other supplements I would suggest if you are interested.
I sure am interested in more info about supplements. Your story is remarkable for the time you have stayed alive. On the other hand you got the diagnoses at much younger age. How long did you have the chemo? Did you have to repeat later at some point?
First, I have never had chemo. I always hesitate to advise on supplements. I would rather point you in the right direction and always advise people do their own research. Here are some websites to examine and always DO YOUR OWN RESEARCH, do what you feel comfortable with.
cam-cancer.org/en#main-content
medlineplus.gov/druginforma...
mnwelldir.org/docs/cancer1/...
I began with 6 doses of Taxotere, mild symptoms, hair loss, bad taste, bone aches. Mostly mitigated by ice packs for hands and feet, (to stave off neuropathy), ice chips (for the bad taste) and claritin for the bone aches. I was pretty fatigued, but I still worked full time as an RN Case Manger, just more slowly. The diagnosis is a shock, but I considered the chemo as a way of punching it in the mouth and my first step in fighting back.
Thank you very much for the info and your support. The oncologist will start me on Nupron next week and Docetaxil in about a month. I think ice packs will make the pain in the hands and feet worse., but I will try it. Very impressive that you were able to work full time. I was thinking of taking a long sick leave, but maybe it is better to keep working so I don't get too depressed at home. How long have you had the decease? Good luck with your treatment!
I am just a year into the process. The discussion with my MO was to hit it as hard as I could in the beginning. I did have FMLA and took a few days off during the treatment as fatigue sets in, but exercise, even five minutes on an exercise bike seems to help to stave off the fatigue. The ice packs keeps the chemo from affecting the nerves in the hands and feet. The ice chips help with the bad taste. As I was able to take more in, (needed the bathroom less as the chemo shrank the prostate) it seemed the taste recovered more quickly.
Thank you for your reply. What is FMLA? Very helpful to have this info about how you feel after chemo. My chemo starts in about a month, after some initial hormonal treatment. Did you discuss using alternatives to Taxotere with your MO, as some people here were suggesting?
FMLA is Family Medical Leave Act. It allows you to take time either consecutive or intermittently without penalty from your employer. I used my sick and then used some vacation, but none of the time could be counted against me as an absence when used for medical care.
I ignored my obvious growing cancer diagnosis for 3 years which registered me at a thunderstrking PSA of 912 but a fairly normal alp of 137. I have developed some theories as to what it all means. I must ask have you had a CAT or bone scan which can indicate your particulars. ie..sclerotic(lytic) bone involvement which would likely explain the elevated ALP. important is any nodal or visceral mets. This I feel is best treated as you are with ADT and taxanes. Having far afield boney mets aren’t that morbid in themselves as all prostate cancers are affected by your treatments. They will die if they haven’t turned castrate resistant rogue. High PSA’s aren’t all bad…they can signify a homogeneous monoculture. That’s good. Very few are completely so but that’s something you’ll likely worry about down the line..I’m three years into this and my PSA remains undetectable. First line treatments work. Trust them…and sleep easily on that.
Thank you very much for the info and your words of support. Bone and CT scans showed multiple metastasis on my spine, lower extremities, cage rib and even scull, althoug the brain is still intact. The oncologist told me that if I don't do anything, I have at most a year to live, maybe two, but organs will start failing, so it would not be much of a life. I am starting Nupron (hormonal) next week and Docetaxil (chemo) in a month. We will see how resistant is my cancer. I am glad your condition has stabilized. Thank you again for your support. It means the world to me.
That’s quite a dire prediction by your oncologist. Things are really different now, there are so many things to try even for advanced cancer. You still have age on your side to tolerate all the treatments.
Not to put too fine a point on my case but your initial response to bicalutimide will say a lot about which way you pursue treatment…great that the cancer has mostly remained boney.
First of all you're not an Oldie... You're going through the same shit we all went (and still going) through. Forget about the prediction the doctor told you about kicking the bucket. Many many members here are fighting those tiny little bastard cells tooth and nail. Listen to the advice of many of your brothers here. Great bunch!!! Tell us where you live so that maybe a member can direct you to a terrific Medical Oncologist (M O) for a second opinion or just for a change (in your neck of the woods). Get sleep, I get it by closing my eyes and building a log cabin in my so called brain. I never get past the first floor. Also Laugh as much as you can..... Keep posting here!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 01/22/2022 6:37 PM EST
Thanks for the uplifting comments. I feel much better now than a few days ago when I first found this place. I live in Massachusetts, in a Boston suburb. I am indeed looking for a second opinion about the diagnosis and treatment. Sleep is important, I agree. I just got a CPAP machine to help with my apnea. Interesting way to think about your conciousness as a log cabin. I guess you never want to go in the basement (if there is one in a log cabin).
🙂
Well it may be a good idea to create a new post requesting if any members know of any good and competent Pca (Prostate Cancer) M.O.s in the Boston area. BTW I actually start my cabin by picking out a spot for it and digging below the surface for a basement foundation...... And I don't even sweat............... Keep posting and keep your chin up.... Please remember Pca is slow growing......
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 01/22/2022 9:22 PM EST
My best advice based on me. Admittedly your situation could be vastly different. Six month chemotherapy with Lupron trial in 2004 with in 7 weeks of metastatic prorate cancer. Never used iced gloves or cap. Worked 16 hour weeks. Lived on Zofran for nausea. Would do it again.
Hit the cancer early and hit it hard exhume you’re body is strong and the tumor burden minimal.. The alternative sucks. Do not fear chemo.
Good luck
GD
DEXA Scan - how often?
Increase in bone Mets?
What's Next?
Husband is Stage IV Metastatic to Bones with Rising PSA
