Feeling a bit disheartened... - Advanced Prostate...

Advanced Prostate Cancer

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Feeling a bit disheartened...

Jscjac profile image
22 Replies

I guess I'm not looking for any particular repsponse(s), but I read a couple of (disheartening) articles this morning and maybe just need to vent (?). The first was from ONCOLOGY (a medical journal ?). It was dated March 8, 2018 and stated the results of a study which showed no benefit with "aggressive therapy" in metastatic Pca. (My husband is Stage 4, with 11 lesions/metastases. Diagnosed July 2017, robotic RP in Sept. and first Lupron injection on Sept.13. Zytiga added six weeks ago, after Axumin scan revealed/confirmed the lesions. PSA week prior to RP was 52. Down to .7 on Jan. 25 when Zytiga was added.). Anyway, we have tried to take the approach of HIT IT HARD. We have a follow up at Vandy next week, and depending on PSA results, etc. I had thought of going to MD ANDERSON, Sloan-Kettering or Johns Hopkins for more input/opinions. My other frustration is the lack of success in finding clinical trials. Thanks for letting me have this little rant. And I would welcome any thoughts. p.s. The second article had to do with the OS survival advantage to chemohormonal therapy v. ADT alone (in metastatic patients with high volume disease). We brought up chemo with onc at Vandy and he took our case to the Tumor Board which came back with the recommendation of Lupron, Zytiga and Prednisone. So that's what we did. I second-guess myself constantly. And maybe I am reading too much ???

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Jscjac
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22 Replies

It sounds like you made a good treatment choice. It's easy to second guess what you do, but best to always look forward, not backward with your treatments. I always recommend focusing on where you are at with your treatment. Whenever I start reading too much about OS stats on various options I get depressed. What's going with me right now and what's the best treatment for me right now. If you feel you have made the best treatment decision for where you are now then just get the most you can out of your life. If you can just take one day at a time, put one foot in front of the other, I find it helps so much with mental health. That's what has worked for me.

Jscjac profile image
Jscjac in reply to

Thanks, gregg57. I think the main thing that has gotten to me recently is reading about OS. It seems that when it’s all said and done, there’s just not been a whole lot of progress made. But we are very new to this and still very anxious. I know you are 100% correct about trying to do ONE DAY AT A TIME. I really appreciate your encouragement.

Julie

Also, ADT plus Zytiga has the same OS benefit as ADT plus chemotherapy (see STAMPEDE trial results)

Jscjac profile image
Jscjac in reply to

p.s. I try to read all these trials and I am nearly cross-eyed ! And I think with many of them, I just am not getting a clear understanding of the entire picture. Arrrgggg !

in reply toJscjac

I often just skip down to the "conclusions" section.

in reply to

I here ya!

in reply toJscjac

Overload, so complicated.There are hundreds of years of experience on this site. Do the best that you can. That’s it. . Follow your good doctor and build up your dads I’m unity with good natural things. Not too early to make that change in diet and supplements to counteract side effects of treatments . Sauna ,massage, accupunture anything to feel better.

softwaremom00 profile image
softwaremom00

I do this. I read and research and second guess our decisions. How are his lesions doing ? Does he have any pain with them ? I have read the posts here that talk about using Chemo early in treatment. My husbands situation was different as he has neuroendocrine we had to do chemo early on or I do not think he would be here.

It is always ok to get a second opinion, even if it confirms what you are doing. We did that and it confirmed that we were on the best path for my husbands situation.

Try to take it one day, week, month at a time.

Tons of hugs and prayers for both of you!

Jscjac profile image
Jscjac in reply tosoftwaremom00

His lesions did not “light up” on the Axumin scam. The radiology onc and med onc say they are “low level”. They (the docs) say that we can only assume they are mets because he had a prostate full of cancer and PSA is still .7. We were so hopeful that maybe he just had two or three and that they could be radiated. But it was not to be. I think your advice is spot on and I am going to focus my energy on taking a day at a time. It does not come naturally, at all. Thank you so much for kind words. And best to you and your husband.

in reply toJscjac

Your father has your capable love to see him through ..

AlanMeyer profile image
AlanMeyer

Hello Jscjac,

Is it possible for you to post links to the two journal articles you read?

Unfortunately, the science of cancer biology and treatment is not yet fully developed. We have clinical trials that seem to point in different directions but, without a complete understanding of the biology all the scientists can do is theorize about what is going on.

As I understand them, the recent trials (last few years) that showed benefit for combined, aggressive therapy - Lupron + Zytiga and Lupron + Taxotere (docetaxel) don't provide ironclad proof that combined aggressive therapy is right, but they do provide very impressive evidence. The trials each involved over a thousand patients, they were randomized, they took place at multiple institutions in more than one place and more than one country, and they appeared to show consistent benefit of aggressive therapy to men with aggressive disease. The conclusions drawn were conservative in that the only claims they made were backed by very high statistical evidence. If they had evidence for other claims but didn't have enough data to confirm them, they didn't make the claims.

Not every man in the trials could be shown to have benefited. Men in both groups - those receiving the combined therapy and those receiving the sequential therapy - died. But fewer men in the combined therapy group died and, on average, men lived over a year longer in the combined therapy group and more of men in the combined therapy group are still alive years after starting the treatment than are alive in the other group.

I haven't read the articles that you found so depressing but I think they'll have to have very strong counter-evidence indeed before they can overthrow the very strong evidence in favor of combined therapy.

Alan

Jscjac profile image
Jscjac in reply toAlanMeyer

Hi, Alan ! Thank you for the information. I wish I could find the articles I read...it was in the wee hours of the morning and I usually make good notes, but I did not in this case. Well, the only thing I wrote down, was "Journal of Clinical Oncolgy" 3/01/18. I am incredibly technologically-challenged. It is a real hinderance. But I plow ahead. Ha. I always appreciate your posts. And in this case, especially. I think whenever I see studies that report OS of 18 months, or any number of MONTHS, I become a bit unglued. I am woriking on trying not to awful-ize and castastroph-ize, if that makes sense. But a lot of days, I just seem to be walking along the edge. Thank you so much for your help.

Julie

in reply toAlanMeyer

It reminds me of trading stocks. One expert explained the pros another the cons and both are totally convincing with their views. I asked my Wells Fargo rep about Face book before the IPO .He said some jackass remark “ that’ll never be nothin” did I listen ? Hell no Bought 10k shares after dropped a little $19.4. My first stock trade. I had a sell order at $25 in and it sold in 5!days with a $55 k profit.I was ecstatic. King of the market. Had some success trading for years after. But if I had that FB today $1.83 million. Looking in the rear view our mistakes are clear .With a new diagnosis we make our best call with our doctors advice. If we are not doctors or chemist we must follow someone..And use common sense. Thank you AlanMeyer for always bringing clarity to all subjects.

LF27 profile image
LF27

Great that you can come here and let it out. It sure can be a roller coaster ride, however, I choose to see the glass half full, and always seek hope over despair. It helps. As I'm sure you've seen, there are many guys in here who are beating the odds, and enjoying their lives. Let's join them, and hope for more encouraging breakthroughs to help us all! I pray daily and thank God for my many blessings. Will continue to pray for all in here, including you and your husband. Enjoy every day! Best, Leo

Jscjac profile image
Jscjac in reply toLF27

Leo, you are spot on in all your points ! This site is my saving grace. Seriously. I am working on gratitude. And prayers are appreciated more than I can say. Thank you for taking time to send encouragement our way ! Can I just say how much I HATE roller coasters ?!? 😂😂😂

Stegosaurus37 profile image
Stegosaurus37

It's awfully easy to get confused. We are talking about decisions that affect our very lives and reading about people who seem like they are in similar situations but are getting very different treatment plans just raises the confusion level that much more. I'm not sure there are answers. Cancer in general is an area where medical science is still in the Stone Age and add to that prostate cancer isn't "sexy" so it doesn't get the attention other types do and we wind up pretty far down the totem pole.

Educate yourself and remember you are the best judge of what works and what doesn't based on your priorities. Try not to obsess and don't be afraid to make mistakes. Also remember we're here for you all the way.

Jscjac profile image
Jscjac in reply toStegosaurus37

Well, I AM heavily medicated for OCD... LOL ! 😂😂😂 But I think what has really been disheartening is the realization that medical science truly is in the Stone Age in relation to cancer (especially prostate). And fear, in general, is an issue for me. I am ever so grateful for this site. I honestly don't know what I would do with the you folks who do a lot of hand-holding and "talking me down". Thank you !

in reply toJscjac

Fear of danger is in our DNA . In this case we can’t flee from it we must fight. For being heavily medicated for ocd you are doing fantastic . Amazing and I feel that you will make the correct decisions. Don’t put all of this pressure on yourself. It just shows how much you care.

We can drive ourselves nuts with too much information. I am nobody, not a doctor but from what I see and read the treatment plan is good. Second and triple , or quadruple guessing is an act in futility. He’s in treatments I’d see them through.I think it’s a good plan. Find sometime for yourself to ( not) think about it .Go to a movie or live music anything that allows you to forget for a minute. It’s not the end of life . It a new way of life . Sorry for the turmoil .Honestly we have all been there.. time tells what works .Prayers for PaPa..

Jscjac profile image
Jscjac

Thanks, Lulu700. I cannot imagine doing this without the support of this group and family and friends. I have been spending time outside the past few days. The weather has been lovely here in east Tennessee and that has been wonderful. We head back to Vandy on next Wednesday for a biopsy on his thyroid ( docs aren't worried about a nodule found during Axumin scan back in January, but are just being vigilant/cautious). And the main purpose of the visit is to get a PSA reading for the first time since he added Zytiga. Fingers crossed. I appreciate all prayers and good thoughts. Best to you !

Funny how much the weather affects us. Enjoy this weekend and Tennessee . We pray for good things. Stay positive, no matter what..

larry_dammit profile image
larry_dammit

I was diagnosed Stage 4 2 years ago yesterday. Mets on ribs,spine and lymph nodes. My doctor at Mosaic in St Joe Mo. went aggressive with me. Cassidex for 10 days, Taxotere Chemo for 6 rounds (every 3 weeks ) lupron and Xgeva with a full blood panel once a month. Started Xtandi when the chemo was done.had my share of side effects but am now living a relatively normal life. Still doing the monthly shots but now it’s Eligard instead of the lupron. Every doctor and every patient is different. Don’t worry about being to forceful ,it’s your life. Fight the good Fight

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