My husband was diagnosed in Early Dec 2019 with Stage 4 prostate cancer at the age of 62. Mets to bones, “too numerous to count”, a spot on liver as well as on pancreas, lymph nodes in chest and around kidneys, also cancer. PSA of 2243.
We have had two shots of firmagon as well as taking Erleada daily. PSA down to 45.
Next week we start Zytiga and Lupron.
We have not had another scan done as of yet.
He is achy from bone pain because of the Mets, all over his body... and of course hot flashes.
He is only taking ibuprofen and Tylenol but does have pain meds if needed.
My question is what can we expect from these new drugs? Should he be taking anything else with them? I read somewhere prednisone should be included.
He has always been very active as we travel to hike many places around the world. We have not traveled since being diagnosed. Does anyone still feel safe traveling outside the country while on these meds? We had planned a trip to New Zealand this year and not sure if it is safe for him to travel. The doctors are worried mostly about his spine collapsing on itself.
Thanks in advance....
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krwtjw
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Prednisone should be taken with Zytiga. It seems that many here diagnosed with his level of disease take Docetaxel in addition to those ADT mets you mention but wait till you hear from others more knowledgeable here
My husband was diagnosed in March 2018 with stage 4 PCa, with significant bone Mets, PSA 980’s. During various treatments including 14 months of Zytiga we traveled twice to Jamaica with no issues. He was just more fatigued and had to rest a lot. He’s 52. We’re trying Xofigo (Radium-223) currently to hopefully help the bone Mets. So we’ll see where things stand after our last of 6 infusions next month.
My heart goes out to both of you. It looks like the oncologists are using a lot from their arsenal and hope there will be positive results. Here, you will receive great support, understanding, and knowledge.
He will be taking Firmagon and Erleada and Zytiga with prednisone? Is that on a clinical trial? It's usually Erleada or Zytiga with prednisone. Fatigue is the #1 side effect of those drugs, so it may slow him down. However, exercise is the best remedy for fatigue if he can muster the energy. He definitely should not put off any vacation plans. A bone strengthening agent (Zometa or Xgeva) may prevent spinal compression. Zometa + Celebrex has been shown to increase survival and may help with the pain as well.
Sometimes they give a couple of shots of Firmagon first to prevent the initial testosterone surge that one gets with Lupron. It's prudent when there are bone metastases.
He has excellent responce until now. Some comparisons show better efficiency of Firmagon than Lupron ( especially for high metastatic burden).
I‘m not aware of advantage evidence when early starting ( before being CRPC) bone strengthening agents ( Xgeva or Zometa). I think You could ask Tall_Alan regarding this.
You also can discuss these topics with your MO.
Your main focus should be to achive non-detectable PSA level as it often predicts much longer survival compared to people with PSA nadir > 4.
If it is only 3 months and he has extensive bone mets, i would say he should not travel far away places as his mets have not fully healed yet. In this situation, excessive pressure and stress can cause compression fractures of vertibra or pelvis. It takes 6 to 8 months for bone mets to heal in most cases after being on lupron,Zytiga and prednisone.
I am now 9 months on these meds and going for my foreign travel (10000miles away) next month as most bone mets are now invisible and seems back to normal to withstand pressure and strain. If you decide to take international travel , he needs to be catious with movemnts and not exert too much.
I travelled between the US and Europe multiple times while on Zytiga. I would let things settle down into a routine you can work with for a few weeks first, then treat that as normal. Main side effect was fatigue but nothing I couldn’t push through with the right amount of rest.
I’m UK based; Dec 17 diagnosis similar, extensive bone mets and lymph node involvement.
Had the double loading dose of firmagon, or degarelix as known here, then six docetaxel sessions, the chemo prior to starting abiraterone (Zytiga) with prednisone.
If your husband likes to keep fit and fight fatigue, I found a cross trainer a sound investment as it reduces impact for spinal cord compression.
For the last 6 months I'm finally "feeling" better. Gaining strength and endurance every day. I slept a lot when I got pain under some control.
Comparing bone and CT scans from over 1 1/2 years ago to a couple of weeks ago it looks like about 2/3 of mets have fully healed.
I started the Triumph Fitness program in Jan and progressing well now that I had finally regained some strength.
I'm over a year past my predicted "use by" date. Though there can be no "cure", putting off the inevitable and improving QOL feels kind of like a win no matter how temporary.
I initially changed diet and added MY OWN alkaline therapy schedule and for ME they seem to be helping.
Think optimistically and fight it with education. Attend a local support group for advanced PCa members regularly.
I was in the same condition 2 years ago. psa over 800, cancer everywhere, bones, lymph nodes, and organs. I'm on zytiga and prednisone. b-12 shots every visit. Zometa injections for bone strength. Lupron every 3 months also. Plus oscal (vitamin) and a regular vitamin pill every day. I'm 68 now. I usually have monthly visits to my oncologist. So we (my wife and I) because of our doc visits and animals, don't travel too far. Doctor always asks about my back and asks if I've fallen. So far no problems outside of losing my man strength. Still harvesting firewood. As long as you have your meds with you, I would feel safe. Just my opinion..
My Dad was diagnosed with over 200 plus bone Mets and lymph node involvement causing major swelling 4 years ago. Once his initial treatment regimen was started and his PSA lowered my parents have traveled extensively
together and with me and my family. Europe, Galapagos, Disney with grandkids, etc.
I would strongly advise as my Mom did to get the best travel insurance you can. They needed doctors notes at times, but it has come in handy. Due to need for treatment they have had to cancel a European cruise and Egypt trip. You may have to jump through some hoops, but it will be worth it for the peace of mind in case something would happen on your travels as well.
I am currently taking Zytiga as well.. The Prednisone I am also taking. I am told this works to help avoid side effects. I have no side effects at all Tolerating the meds very well Aslo taking Eligard Lupron as well. Started with 2 years of Firmagon injections every 28 days for 2 years the last 6months of firmagon was failing. Numbers went up. Switched to Lupron, for the last year plus, numbers still increased. Now on the Zytiga and Lupron. Will have series of scans March 3rd. & bloodwork to see hopefully improvement. Ive been stage 4 since Oct. 2016. I ended up with Bone mets multiple places. Spinal column at least 6 Ribs 2 places and left Hip illiac and bone marrow there. Have to say no real pain issues currently.. Had hip pain severe but radiation leveled off the pain. Only other radiation was 45 treatments to prostate in 2017.. I feel i'm getting best treatment out there. Simply controlling the spread of this decease is the best that can be done. Hopefully you get no more side effects.. The hot flashes are most likely from the Lupron.. Zytiga is very strong at 1000m every day and is very tolerable for most. Wish you best..
Have had 4 shots of Xgeva and 4 months on Xytiga and Prednisone, plus walking daily. Went to Cambodia, Laos and Vietnam early January. Took it a bit slow and easy in Siem Reap, Cambodia due to lots of walking but enjoyed the ruins.
Enjoy the trip..... but heed the advice that Fightfordad posted above... (A visit down under, down under would be wonderful for you both, be aware of coronavirus)...
We're about three years further on the journey, so I know how scary and stressful things can be at first. You've gotten some great information here. I suspect that Docetaxel is in your hubby's future. If so, be sure and search this site for lots of tips on fighting side effects. God bless you both!
Sorry to read of you and your husband's situation. I take 1000mg of Zytiga with 10 mg of prednisone and get a Lupron injection every 3 months. (Main side effect of Zytiga is fatigue) I also now take 25mg of Hydrochlorothiazide for high blood pressure, caused by the Zytiga. Check his blood pressure when on Zytiga.
Do as much of your own research as you can from reputable websites like NIH, SKMM, Johns Hopkins, etc. and be sure that what you are researching matches your husband's specific circumstances. There are many treatments and trials that have very specific guidelines about under what conditions they are used. This way, you can ask questions of your husband's MO and know where the right treatment may be happening.
At such an advanced stage, it is difficult to say what will or won't work but there are protocols for the sequence of different types of treatments. When a treatment/medication begins to fail, the MO will proceed to the next. Taking bone-strengthening medication is very important to help avoid fractures and further compression of the spine that can be exacerbated by the ADT meds.
I have found physical therapy helpful for back pain and proper posture to relieve pressure on the spine. Aside from walking, I think exercise might be best approached with a health club associated with the health center you are going to for treatment. They often offer deep discounts and trainers who specialize in exercise programs appropriate for specific medical conditions and fitness goals.
Once I have a hernia operation (caused by robotically-assisted prostatectomy) and get in better shape, my wife and I plan to make a trip to Machu Picchu. It is a life-long dream. I will go slower and maybe see less of all the sights that I might otherwise have seen but I will see all that I can!
I suggest letting your husband get used to his new regimen of medication and regain some strength and endurance. Check with your MO and then go on your trip, as soon as you can! His medical condition will only worsen with time and make the trip less possible.
I wish you and your husband to live in the moment, enjoy new and exciting adventures wherever possible. Try to weigh the value of new treatments for him against the quality of life he will have. Every moment is precious.
We're in a nearly identical situation and just got back from 2 weeks in Europe. It went without incident, but I just posted in another thread that he snapped his arm this weekend, so it can definitely happen.
We paid a lot for trip insurance and stuck to countries with good health insurance. Also, I did all the lifting of suitcases onto train racks and into cabs. Be prepared and travel light so it's not too overwhelming.
I think your man is in serious trouble with Pca. My Psa has never been above 50, since diagnosis in 2009, with Gleason 9, at age 62, when Psa was 6. It was inoperable. I have had lot of ADT and add on drugs such as Cosadex and Zytiga that worked for awhile to keep Psa low, while the number of mets grew in lymph nodes and bones, and became countless.
Chemo failed. But Lu177 seemed to knock most of all these mets out, and latest scans show I have only 2 active bone mets, and Psa is 1.5 now. I feel 27, not 72, even with 45 yr age gap.
I don't like travelling anywhere much except around town on my bicycle and since 1986 I have done 247,000km. It keeps me fit, even with Pca. Zytiga +prednisolone is normal, with the pred to replace what the Zytiga stops the adrenal glands from making.
If I were you, I'd get PsMa Ga68 scans to see if Lu177 would help, and travel to Germany to get it asap. If I did not have Lu177 last year I would be in palliative care now, preparing to die, maybe wishing to die, to escape the pain. But I am still here, and had a good day, and cycled 60km this am, had good time talking to my local doc, had nurse shoot me up with Lucrin. Disease is more or less under control. There are options going forward in time.
I would be worried about bones cracking if your man does too much, and maybe now is time to forget about travel and hiking and focus in disease treatment. Bones are extremely important. Lu177 seems to attack all soft tissue mets at first and then take slightly longer to deal with bone mets, and maybe being on Zytiga will help the action of Lu177 be more effective. My 4 shots of Lu177 cost about usd $27,000 with no medicare funding, and I am not insured here in Australia, but I have savings, no need to have made insurance companies rich over last 50 years.
Haere Mai, we would love to welcome you to New Zealand. We are still coronavirus-free. I suggest you get good orthopaedic advice re severity of your husbands skeletal lesions. That is, likelihood of fracture and get the most comprehensive med insurance. We are having a 'cracker' summer so don't delay. =Rob.
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