CT scan this morning showed PC has spread to my husband's liver!! We NEED a HAIL MARY!! -and any words of wisdom that will give more hope
We plan to seek additional opinions from other prostate cancer oncologists - any recommendations? (we are currently at U of Chicago)
Our oncologist recommends starting Jevtana-carboplatin chemo ASAP - in 2 days and says success rate is (only) 33%. Has any else been down this road? (since we're trying hard to be optimistic, we're looking for words of encouragement)
Here's a brief background:
1 year ago - 60 yr old diagnosed with metastatic PC with extensive mets to bones. (shocking as there were no symptoms other than common aches and pains for his age) Went through the standard HT (Casodex + Lupron) + 6 cycles of Docetaxol chemo and went into remission which we were hoping would last at least a couple years - NOT just 4 months!
2 months ago CRPC symptoms began - developed leg pain which he thought was 'just' sciatica, esp. given lab results when getting Lupron shot showed PSA at 0.10 (nadir was 0.09). Leg pain suddenly became severe about 3 weeks and an MRI confirmed CRPC - revealing tumor activity in the lower lumbar area. Doing 10 consecutive days of radiation for this. Today was #6.
PSA around time of diagnosis was 5.8. Highest reading of 18.75 about a month later after 3 weeks of Casodex (on day of first Lupron shot)
Gleason scores 7 (4 + 3) and 8 (4 + 4)
Mutations - somatic BRCA2 and PTEN
ARV-7 - negative, per test done at Johns Hopkins last March
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JLS1
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Praying a rosary for you and your husband. Sending prayers and best wishes to you both.
2days to decide.. Boy , that’s some intense pressure. He will make it. 33% seems low but it is better than no chance . Dont dwell on that stat.. They told me I had a 50/50 chance to survive my initial treatments . I took it .I had no other option in my case. 61 is young, I’m 57. I believe he will get past this unfortunate obstacle and do with success what he needs to do to stay around for a long time . I’m positive someone will answer you back that they were ,or are ,in the same spot as he is now exactly .when you say leg pain turned out to be Crpc that is a fear for me . We are all fighting daily scirmishes in what we know is a battle to survive and in the hope to limit our suffering . I understand the joint and muscle pains I’ve had have increased due to treatments and no T hormones . But sure don’t dwell on what (can) go wrong in my future . I’d be lieing to you if I told you that the worst case scenario doesn’t enter my mind when I have some weird pain or discomfort. Now I shuffle it off pretty fast, but right now thank god im not in brutal pain. As we suffer mental anguish and the pain and side effects of treatments just believe in winning this battle in 2days, and you will . Hope for rapid recovery and to relinquish that pain .The wonderful spouses suffer alongside their men. I survived due to my love.. He has you ,which is everything. Your love will see him through.. Our prayers go to you and him in this difficult time .Good finding this cite . Please stay in touch..He needs your strength to heal from this . Try to make him laugh somehow everyday . .we are basically pawns in APC war .. But even a pawn has a chance to make moves that can help change the game . In our case we can have a hand in our own recovery .. Keeping positive in the face of these battles will help to ensure a better outcome . 3yrs of treatments and now doing better. am I symptom free? No way , don’t believe many of us get that pleasure .But I’m here with my sweetheart feeling incredible love everyday .
Once the pain subsides and he heals then you both should be able to take a big sigh of relief ..and begin once again rebuilding .. Be kind to yourself ..
• in reply to
I agree, forget the statistics. The only percentage that applies is everyone here is 100% alive right now.
What a beautiful comment to make . . . "I survived due to my love." Yes, spouses do suffer alongside their men, probably much more than the men will ever have any idea. It's painful for wives to sit by and feel so helpless. Kudos to you for making it known that you are "here with (your) sweetheart feeling incredible love everyday." You can't begin to imagine how wonderful that sounds to your wife, I'm sure. The love for each other, even on the worse of days, can get both of you through to the next day, which is bound to be better. Remember, this is not just mCRPC that YOU have . . . . it's something you BOTH have. What impacts you, impacts her. What I see here is a very blessed gentleman who appreciates and loves his wife for her support and encouragement, and a loving wife who likewise is blessed to have such an appreciative husband who acknowledges her role in his journey. Having traveled that road, believe me, your sharing this journey, the good times of celebrating improvements, and the not-so-good times of less celebrating, means more to her than you will ever comprehend. Unfortunately, my dear, sweet husband felt he was helping me by sparing me the pain of his journey by keeping everything to himself, rather than sharing with me. Afterwards, I felt only resentment that I had been kept in the dark with many things. I thought we were a team and had agreed to maintain an openness. It hurt me dreadfully to learn how much had been shared with others, but not with me. Glad to see that you are not guilty of that. As vandy69 said, "Never Give In." And continue that open line of communication. I will be praying for both you and your sweetheart.
Thank you. I happily accept your loving prayers.. I’ve not been sin free towards my love. I went thru these last 3 yr holding on to anger and of course that’s fear. Was a living hell for my wife.. I haven’t wanted to do more pharmaceuticals so I opted 10 days ago to try Sam-E . My naturalpathic that’s guided me with this said if it works it is right away and if it’s not ,things get worse right away within a few days . Nighttime’s have been tuff urologically , night sweats frequent urination,but I ve been waking up mad not feeling good and I’d yell and verbally denigrate my sweet love.. I’ve been a lot better in the past few months . But honestly I wrote my self a suicide note a few weeks before the Sam-E.. WALAH! A breakthrough for us. Now I awake clear headed not lathargic as in the past. I feel good in the morning , more energy throughout the day. Not mad anymore. When something aggravates me I now instead of blurting out and sharing my frustration , I chill. My wife is forgiving me, we are physically closer .Anyone close to an APC patient knows the daily grind of feeling gernerally screwed with constant gripes. No more whining bitching and complaining aboutPc... We all go thru the same BS with our APC and treatments. I’m fortunately had a pretty good generally healthy life up until APC. Happiness is the key to life . Without some happiness, what’s the point? This Sam-E helps me so far tremendously. An inexpensive natural ingredient has improved my life.Hope this last . After a week of no emotional explosions Life just seems better.. my wife is now blooming with radiance. With the change in me.
How wonderful to hear this. Your wife sounds like an angel, and I love it that she "is forgiving me, and that we are physically closer." I'm so envious of the two of you that tears are streaming down my face. Everything you are saying is such uplifting news. Those men who have shut down emotionally should pay heed to what you are saying. Any wife would dearly appreciate being told there should be less emotional explosions, and that you feel life seems better. Have you told her this? Word for word just as you said it here? If not, then do so immediately, and she will continue blooming with radiance, seeing the change in you. God Bless You!
Thank you for the kind words. God bless you also ! There is a quote from the Bible that says it’s better to live on the roof , then with a contentious wife .. so peace in the valley for now . I’m off her case I’m seeing things from her side and I’m off the roof. Thank god ! For love.
You're so cute! It's a "WIN-WIN" situation for you both! YEA!!!
Very sorry to hear the latest on your husband's cancer.
It sounds like he is doing the right treatment for that type of prostate cancer. From what I know, the type of cancer that goes to the organs and soft tissue often doesn't produce the PSA. That may expain why his PSA never went very high and also why he became Castrate Resistant more quickly than expected.
Platinum-based chemos are effective and there are others on this forum that have had good success with this treatment. Since he also has the BRCA2 mutation, ask your doctor about the possibility of PARP inhibitors which can work against PCa with that mutation.
There is not much advice I can give but I can offer all my encouragement as I am on a very similar journey. I started ADT in April 2017 when PSA reached 7.5. PSA nadir was 2.5 after 3 months and was 47 at last test 29 Dec. PET scan shows 5 mets in liver and multiple soft tissue lesions. I have had my first shot of docetaxal and waiting to get results from gene tests/ DNA repair tests.
So all I can say is - we are all in this together, keep fighting, fight for yourself and your husband and everyone else on this forum.
It reminds me of and old blues song “ I need a miracle everyday..We can never stop fightin or praying. A whirlwind in the midst of waiting for results and suffering treatments God bless you!
Yah! The choices that no one ever thinks they’ll have to make.. you are pretty grounded in all of this. Commendable . Hope these treatments do what’s intended and that good things shine down on you from above.
My cancer spread to liver, lungs and bones about 15 months ago. I am a patient at MSK. I thought I was a goner at the time. I have been on ADT along with Chemo (Docetaxel and Carboplatin). I just had my 17th infusion of the Chemo drugs. I have infusions every three weeks but have missed a couple for a broken bone and other tests. I also had a liver biopsy to determine the cancer DNA . That proved nothing for me, but may be useful for you. My cancer has stabilized and PSA and other cancer markers are looking very good. I expect to remain on ADT and Chemo for as long as it works, hopefully for many years. It is no fun but it has kept me going. At 73 I hope to have another dozen years.
I'm glad to hear of your good results. Your story reminds me of a friend of my parents who has been fighting stage 4 colon cancer. The cancer is everywhere in his body, and his oncologist gave him a max of 6 months. That was about 5-1/2 years ago! He gets chemo regularly and his cancer has remained stable. I suspect his attitude helps - he says he doesn't have time for cancer because he still has too much to do!
I have not had this kind of scenario happen to me. I have been on casodex (bicalutamide) the generic form for about five years and PSSA has been undetectable that whole time.
If your seeking a nearby second opinion, My former oncologist, Maha H.A. Hussain is at Northwestern. She is known worldwide as a prostate cancer specialist.
Great! Tell her that her we miss her at U Of M. She is a very positive person. She is also a keynote speaker at ASCO Annual Meetings. Always on the cutting edge.
I will be praying. I think the suggestion of parp inhibitors is good with braaca , and also have heard of people doing well with the addition of carbo, I will pray for a good response and minimal side effects.
Thank you everyone for your replies. I made a mistake on the chemo, it's not Carboplatin-Taxol, it's Cabazitaxel, or "Jevtana" - "Carboplatin". Has anyone here had this combo? -the nurse just called to tell me she gave me the wrong paper work with the wrong chemo.
Thank you Dan. Yes, the nurse just called to tell me she gave me the wrong paper work with the wrong chemos! She also said he should NOT get the chemo tomorrow because he's still getting the radiation, so he's starting chemo next week after finishing chemo.
Where was he having radiation too. I just got done with extensive radiation too pelvic area and prostate, and it took me 2 weeks to get past side effects of radiation.I think the suggestion by Nameless for a 2nd opionion by Maya Hussain at Northwestern is a good one, She is a very well known MO , and done a lot of research. Definitely ask about parp inhibitors with the braaca. I will pray for a good response to all therapies.
Thank you Dan. My husband is getting the radiation at Northwestern because it's much closer for us. It's supposedly very low dose radiation, "site specific" and only to his lower spine. That must be why our oncologist at U of C feels it's ok to start chemo the day after he finishes the radiation. Despite the urgent need to get this very aggressive cancer under control via chemo, I think he feels its more important to get him able to walk again asap, for quality of life reasons. (the pain became completely debilitating about 3 weeks ago, of course, during the holidays when he was on vacation!) The plan is after the chemo may be time to try a parp inhibitor.
I set up an appt with Dr. Hussain for the end of Jan, the soonest we could get. I told them the situation is urgent. It will be very interesting to hear her thoughts.
Liver mets move quickly and are hard to ever irradicate for good with systemic chemotherapy. While there have been some "breakthroughs" in PCa in the last decade there has been little advances in the most serious forms of the disease that moves to the vital organs. The prostate "experts" need to look to colorectal cancer and how much better its managed in the liver than prostate cancer with ablation, chemo-embolization, radio-embolization, hepatic catheter pumps and so on as "standardized" treatment. While platinum chemos are the norm with Pca in the liver, they don't necessarily perform the best with all patients, some would do much better with a taxol. The leading prostate oncologists are falling short of the bar even at the most "esteemed" institutions in regards to liver metastasis where its still 1965 in many respects. Very Sad!
I will certainly keep you and your husband in prayer. I would say do your best not loose hope. Make each moment count, go out in nature and keep a positive attitude.
I am also looking for that "Hail Mary"! Have been in this battle for 5 1/2 years (please see bio for treatment history).
In September 2017, a MRI of my liver revealed 20+ lesions--as you have learned this is not a good thing.
Had a CT guided liver biopsy with sample sent to Foundation One. Found genetic defects but none are currently actionable.
Began chemo with Docetaxel/Carboplatin combo. Completed 6 cycles on 1/9/18. PSA has dropped from 10.8 to .5, and that was before chemo #6. Have had 2 additional liver MRIs, at halfway point of treatment and just had one yesterday. Liver lesions have been reduced in number and in size.
Currently getting a break from this continuous chemo. Chemo takes a toll on your body in numerous ways and I am looking forward to some level of recovery.
For the long haul, it looks like chemo (either same or different combo) will be required for the liver issues.
Earlier in my treatment history, Guardant360 liquid biopsy found an ATM defect. If you have that defect, or the BRAC 1 or 2, the PARP inhibitor Lynparza can be prescribed. I took it for almost 1 year. If that becomes an additional option, make sure of insurance coverage, as it retails for about $10,000/month.
When we found my husbands cancer it was already in the liver but his was a mix of adenocarcinoma and Neuroendocrine
He also had the brca 2 mutation but we didn’t get that liver testing from caris till is was too late to help my husband . He had good Shri mage with etopisode and carboplatin six rounds . His dr never did rations which I think we should have on the bone mets at least. Also the biopsy report did mention trying a parp inhibitor which we never got to try and still haunts me now . Our oncologist sent prostate biopsy off early for gene tic testing but not the liver till too late . He also mainly treated the liver saying that was where the battle was . I hope you get good results
So Caris can test your liver for prostate cancer? Still need a fresh biopsy to do it? How can I get a test to see if I have the BRCA mutation? If I have that mutation then I probably will have my cancer come back, you think? Thanks Breese1010
My husbands liver was tested because we knew his prostate cancer had metastized to his liver . They took sample from the tumors on the liver and sent to caris though I believe they could have done blood test which we should have done because dr me reed mentioned that to us we had to wait three weeks to get liver biopsy done because his platelets were too low . That makes me feel like negligence on part of our dr because it took a month almost to get results from caris and they came in last week of my husbands life . I still struggle with that and am very angry at our dr for not telling us that we could have down a blood test. The o my thing I know about brca2 is it is listed as a mutation pathogenic in my husbands report and they recommended a parp inhibitor but that was too late for him . Also his prostate and liver tumors were a mix of adenocarcinoma and also Neuroendocrine which seemed to be o it thing dr was treating and worried about as his was grade 3 aggressive they said . Again wish I had gone to get mor opinions at other reputable institutions.
Thank you for sharing your story Breese1010. I'm so sorry to hear about your husband. This is all so VERY scary!! Hindsight is 20/20. We all have regrets when we look back, but know in your heart that you did your very best through extreme circumstances.
I would recommend Dr. Morgans. She was my husband's oncologist before she took the position at Northwestern. She's very informed about trials, etc. Wishing you all the best.
I have had liver mets for a year. I had radiation for my spine due to stenosis of the spinal nerve root canal being narrowed by the bone mets in my spine. Helped a lot with the pain. Then end of May started Docetaxel and Carboplatin for 8 rounds (every three weeks), side effects knocked me silly, after 7 months. PSA dropped to 0.6. PSA back up to 1.6 after 6 weeks. CT image showed numerous liver mets, with one having increased to 5 cm in size. Had microwave ablation performed 2 weeks ago on the this lesion. Post MRI shows four remaining lesions, 3 about 2.0 x 2.0 cm and one about half that size. Did have another biopsy taken of the liver lesion to see what may have changed since bone biopsy, 18 months ago. Awaiting biopsy results and what options remain. Jetvana is one, but not much of a probability after docetaxel.
Thank you bb66hotflash. I hope you have good news on the biopsy! The microwave ablation on the liver mets sounds interesting. May I ask where you had this done?
Seek second opinions . Try to see Dr. Scholz from Marina Del Ray, California. I went to six different hospitals for "second opinions" when I was first diagnosed. Dr. Scholz will treat you how he thinks you need to be treated and not by any hospital's protocol treatment plan. You can have a few doctors who can work together to treat you. I had taxotere with carboplatin when first diagnosed in 2010. Now on Lupron, Xtandi , Zytiga to keep PSA undetectable and testosterone under 20. Had radiation on a lesion spot on my hip. My PSA was about 6 with gleason 4 +4=8. Bottom line is to get Dr. Scholz to be on your side and help you and your local Oncologist. Good luck . You can do it . God Bless you.
Thank you motosue!! Interesting point about hospitals following protocol treatment plan. I was shocked when a friend of mine explained how this can work against patients best interest, and how the hospital's insurers are behind it all. Some want the hospitals to do whatever is necessary to eradicate the cancer, even if it's not in the patient's best interest for quality of life. (I think to help them boast a high cure rate) My friend had esophageal cancer and was scheduled to have a $100,000 major surgery to remove the tumor and basically rebuild much of her GI system, requiring several days of hospitalization. Thank God she ran into an old friend just a few days before the surgery who told her to go to MD Anderson for a much less invasive treatment with about the same success rate via a $35,000 45 minute outpatient procedure!
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