My story with my best buddy

[catheid]

My husband was diagnosed in 2015 stg 4 with bone mets. He stopped treatment 6 months ago due to side effects of lupron he had every one. We go to dr this week to find out where we stand. His psa is creeping back up. I think about him every day. Hopefully the news is hopeful. Any treatments out there besides lypron. He as also undergone radiation to bone mets. In the meantime i work and rv with him as mych as I can! Hate cancer!

[Chiquis]

Hi catheid,

I'm sorry to hear that Lupron didn't set well for your husband. It is very scary when PSA starts to rise, try not to panic. There's more options for your husband to hopefully bring his psa down. I know everyone is unique but in my husband's case a first shot of Firmagon(degarelix), Zytiga and Prednisone brought the psa from 8.7 to 0.1. The Firmagon was later switched to Lupron every 3 months. I wish the best to you and your husband. Stay strong, take care, you are not alone🙏💛

Sincerely,

Erika

[AuburnAngel in reply to Chiquis]

This is one of the recommended plans for us. Hubby had his loading shot a few days ago and it has been a rough start. Next were to decide between 16 weeks of Taxotere chemo or 2 years of zitaga and prednisone, the radiation. How's your experience been?

[Chiquis in reply to AuburnAngel]

My husband started with Firmagon, Zytiga and Prednisone due to a rising Psa and mets in 2 lymph nodes. The combo treatment dropped the psa from 8.7 to 0.1. The symptoms that has bothered him the most is fatigue, hot flashes, loss of libido. He switched to Lupron insted of Firmagon in Dec. However, we had been able to continue are lives as "normal" as possible.. cruising, work, etc. The MO gave him the option to do aggressive treatment and to do chemotherapy also. This decision is something that I struggled with because I didn't think it was necessary at the time since his psa was at 0.1....But at the same time I was also thinking if we don't have any options for any treatment left, in case if it was still needed later on. At the same time, how about if there are hiding cancer cells that couldn't have been seen by the Axumin pet scan?? Also for how long will Lupron, and Zytiga will stop working? There's men taking Lupron and their psa remains undetectable for years. Others aren't so lucky. So in which group my husband will be? So ultimately my husband decided to hit it hard & not give the cancer a chance & add the 6 rounds of chemotherapy. He's halfway through. The first and second chemo were not bad. The third one was rough, loss of appetite, nausea, tiredness, runny nose, cough, and a bad headache. I said it before, I feel like our lives are on hold right now. I hope this helps. Decisions, decisions. It will be nice to know exactly what is the perfect treatment for each one of our husbands but since we are all unique, we will never know what's going to work. I can't complain, I just trust God that everything will work for good no matter what. Keep in touch. The best to both of you. Remember that you are not alone.🙏🖒💖

[murphnisk]

Catheid, I've applied for a study using the drug enzalutamide trade name Xtandi. As a part of the intro, the info given indicated high success rates in lowering PSA. Might be worth checking out.

[catheid in reply to murphnisk]

Thank you for info

[Caring7]

I'm guessing your husband has some other things going? While taking the Lupron, he should be receiving Xgeva for his bones. I don't know what side effects not getting Xgeva would have but it might be worth checking on that. Was he also taking Casodex? The first attack is usually the Casodex + Lupron to eliminate testosterone, the food source for the PCa. Xgeva is for bone strength or health.

If he has mets outside of the pelvic region (or maybe even inside) - the next stop might be Taxotere chemo (look up the CHAARTED study). Giving chemo early to advanced PCa was proven to be effective for overall survival. The idea is to knock down the aggressive cells early. My husband was diagnosed in 2014, pretty much right after the findings were announced at the big cancer conference. They ended the study early so that it could be approved -- results that good. It seemed to help.

My husband is still on Lupron w/ Xgeva. Dropped Casodex when he became metastatic castration resistant. He was on Xtandi for about 2 years with good results, keeping the disease at bay. During that time, he also had RA223/Xofigo treatment (which is worth asking about for bone mets) and also Provenge/immuntherapy. He is now going to try Zytiga (abiraterone).

You should have several options to try. I'm surprised that the doctor waited 6 months to re-evaluate? That's not really clear in your message.

With the complications from Lupron, I'd strongly suggest trying to do a consultation visit with a research expert. We see Dr. Small at UCSF, but any large research facility (Dana Farber, Mayo, Johns Hopkins, MD Anderson, etc.) will have this kind of service. We go once or twice a year and get his overview and opinion of treatment. Our oncologist appreciates the extra info. Dr. Small doesn't "treat" my husband but serves as a sort of advisor -- we call him the "uberoncologist." Most oncologists see all kinds of cancers. The expert deals only in prostate, and is aware of every little thing going on in the field. We travel 2500 miles to do this (and fortunately can see friends in the area too), and our insurance does cover this.

You do have a lot of options that should be opening before you, and having this kind of overview can be super helpful for sorting out the options and prioritizing treatments.

I hope that your doc has some helpful things to say this week.

- Brenda

[sgrama in reply to Caring7]

Hello

My husband is going thru the Provenge treatments right now. Has your husband seen any kind of good results from it yet ?? My husband tried the Zytiga for like 4 months and it dropped his PSA from like 176 down to I believe 30 very quickly but then it started rising again and oncologist wanted to give him more chemo recently but we decided to try the Provenge before more chemo. He is on Xgeva and Eligard at the moment. His has metastasized to the bones mainly spine and pelvic areas. His PSA on Nov. 21st was 30.9 and then Jan. 8th this year it had went to 62.7 and then Feb. 5th it was already to 92 goes on the 28th of this month for more blood work and I'm very worried what it might be now almost 2 months since last one.

Thanks for listening and have a good day

Sharon

[Caring7 in reply to sgrama]

Wow - that's a lot of ups and downs. A couple of specific things, but first -- I wonder if you have gone to a prostate cancer specialist for a consult (see my post below this one). It's one of the best things we did, fortunately from the start, to consult with a research specialist. He doesn't do the treatments but gives us a big picture and recommendations, and really knows all of the options.

Some specifics:

- except for a few rare months of stability my husband gets his PSA checked every month. It's a key, low-cost marker for progression. It's not everything once this stage is reached but it's a barometer. Also with such radical shifts, it would be good to know how long it takes PSA to double (from 10 to 20 for example, or 50 to 100). Different men have different PSA ranges. My husband's has always hovered very low but that has no bearing on the aggressiveness of his cancer. From what I understand the doubling time gives a better picture for an individual. (But the big numbers are still going to look scary right!)

- Provenge does not show any specific clinical results. PSA will not go down from Provenge. The only way we know Provenge works is because of the clinical trials.

- that said, we threw everything at my husband's aggressive cancer: Started with Casodex + Lupron/Xgeva, quickly did 6-Taxotere (per CHAARTED trial and protocol), he went castration resistant so we threw Provenge and RA223/Xofigo, and then Xtandi at it. After all of that (over about 9 months I think) - he was very stable on Xtandi for about 2 years!!!

- So our theory is that it did work. Xofigo/RA223 is another one that doesn't have many direct results, although you may see regression of bone mets. Get a better explanation from your doctor, but in my uninformed opinion, the chemo might help. The idea motivating the CHAARTED study was to kill the most aggressive cells early (rather than the previous idea of waiting to do chemo as a last-ditch effort). The chemo effects can vary but a lot of men tolerate it pretty well -- some lose hair (some don't); tired; low blood counts, but given "chemo" a lot of men are relatively OK with it. My husband worked with just a couple of days off on the low days (about 4-5 days after infusion). My husband is youngish (was 53 at that time) and in good physical shape. See other posts for reactions -- or start a post to ask.

Try to get a more comprehensive plan from your doctor and more explanation about why he wants to do what when. (Again this is where a research expert can really be helpful.) It's not the faulty of MedOnc -- who usually sees all kinds of cancers. Someone who only deals with prostate cancer has a much larger experience with variations of the disease and can give a much clearer picture of things.

I hope you find something that works!

[catheid in reply to Caring7]

Brenda thank you for this information. I was under the impression that this was Bobs only option. I am going to look into the treatments you mentioned. I think this may have been the best thing I could of done to become part of this community. Thank you again. Heidi M

[Caring7 in reply to catheid]

I'm glad it was helpful. You say below that you will seek a consult in Boston and I think that is an excellent idea. Contact Dana Farber. Having an uberoncologist who specializes in Prostate will be a really big help -- mostly provides the big picture, which includes all cutting edge options. Regular medical oncologist should be fine, even happy, to have this resource. I can't quite tell from your comment, but it seems like you and your husband could use a more comprehensive treatment plan with much better explanations.

And p.s. keep having fun together!!

[NWLiving in reply to Caring7]

Sounds like our husbands are on very similar paths. Keep in touch.

[catheid in reply to Caring7]

I cannot thank you enough for your information. I am going to talk to his doc today and also look into Dana Farber. We live in between NYC and Boston. I have to say I have been letting my spouse take the lead on this - it is an odd dance we are engaged in. I am an RN however I don’t work in oncology. He is a bit of an ostrich if you understand my meaning. Obviously time for me to step in. Thank you again.

[KingRasP]

Hello catheid, so sorry for all that you are going through. One thing I can tell you, there is a lot of information and support here.

After Lupron failed our Urologist switched to Trelstar, and we had good results.

Oncologist started Xgeva and Zytega with Prednisone.

Radiologist to begin Radiation and and Radium 223, for boney pain, this week.

With much hope and faith for good, better and even best days ahead. One day at a time.

P.S Do take care of yourself. It’s so important not to get Care Givers “burnout.” Hugs...

[catheid in reply to KingRasP]

I appreciate your thought. Bob had radiation last summer. I have never heard of the other drugs. I am going to see about a Boston consult.

[Caring7]

Speaking from my experience of a lot of emotional ups/downs with my husband . . . be careful to let your husband keep taking the lead while you increase your information and your input. The drugs cause a kind of menopause with our guys, and there is an emotional seesaw component that is very real and very hard to deal with. Everyone is different but my husband has had several points where he gets in this phase of I'm going to do everything myself, I don't need you to do stuff, etc. etc., (although I track all the appointments, pay all the bills, keep all the notes, contact the consulting oncologist . . . and do most of the home stuff). It passes, eventually.

As KingRasP has noted -- take care of yourself too. Even if you're lucky and don't have emo-hubby (!) it's still draining on you. Try a support group and see if it works for you (doesn't do a lot for me, but I've gone occasionally). Post here just for someone to listen and tell you they've been where you are and you will get past it.

Good luck at Dana Farber or wherever. We have to fly from Honolulu to San Francisco to see the consulting oncologist, and it's totally worth it. And it's only been 1-2x/year.

- Brenda

[catheid in reply to Caring7]

Bob and I had a good long talk with his oncologist our last appointment. We discussed much of what you shared with us in your response. He readily explained the drugs. Why we were taking the path we are. And also lined us up with other members of their team to deal with issues my husband was embarrassed to adddress his sexuality and difficulties in that area. I am still seeking another opinion. Bond vacation has ended and he is resuming treatment. Bicalutimide afollowed by Lupron. Bone scans look good no further spread. I may try caregivers group at my hospital.but generally I am not a group kind of girl. I am willing to give it a shot though. Thanks for support Brenda

[Shertag in reply to catheid]

Communication is key. Even when you don’t talk about the important things as often. Sex was a big issue for my larry. I wouldn’t let him talk to the urologist about more drugs. He dealt with my issues after my hysterectomy and I want to accept his changes with out added stress of sex. We both miss it but intimacy comes in many forms. Keep talking with anyone who will talk it really does help. I feel we have grown through this. Not that we wouldn’t go back and stop the problem before it started. But every day is a blessing.

Be blessed

Sherry