So glad I found this site - seems like the best source of info and ideas I have seen. So it’s time to stop lurking and start participating. I am 67, still work, was diagnosed in Nov. 2017. Gleason 4+4, metasteses to local lymph nodes, pelvis, hip and one rib. Large tumor on the prostate itself. PSA at diagnosis was 36. I’m treating with Firmagon and Xgeva every 4 weeks, casodex and prednisone daily, docetaxel and neulasta every 3 weeks. Plan is to add Zytiga after we finish the 6 docetaxel treatments.
I wouldn’t wish Docetaxel on my worst enemy, but i’m over half finished. And my PSA after 10 weeks of treatment dropped to 0.14.
What’s unusual about my situation is that the bone lesions were lytic rather than blastic. Docs suspected multiple myeloma, but all tests for that were negative. Does anyone else have any insight or info on that? All I have gotten from the oncologist is that it’s unusual but not unheard of.
Without trying to sound like I am taking my excellent initial response to treatment for granted, I am wondering whether there is more I should be doing or looking at, and whether I should start thinking in terms of cure versus control? The more I read, the more optimistic I get.
Last, while there is no way to prove it, I feel switching to a 100% plant based diet 2 months ago has made a difference.
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Canoehead
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Welcome me to our group! You already know we are here to help and support each other.
The treatment you are getting, and your response, sound great. Yea, chemo is no walk in the park, but it will be over before you know it. Exercise and drinking lots of water are key. Also, taking Claritin when you have your Neulasta shots helps a lot with bone and body aches.
The only questions I have are 1) is your oncologist a specialist in PCa?, and 2) have you gotten a 2nd opinion? I’m sitting in the lobby at MD Anderson right now. They were my 2nd opinion and I wish I’d visited them sooner.
Just a couple of ideas...welcome to the group. I’m sure you will get lots of helpful responses.
The Claritin is helping, but I just feel too fatigued to get real exercise. I am seeing an Oncologist at U of Chicago, who specializes in PCa, in 2 weeks. Writing down questions as I dig deeper into this site. You mention MD Anderson - my best friend is a surgeon, and that was his suggestion. Would like to hear more about your experience there, if you’re willing to share.
Canoehead, like JamesAtlanta, I am also being treated at MD Anderson in New Jersey. I finished 6 chemo last July and my PSA is currently 0.2. I take an injection of lupron every 3 mos and xgeva every 6 weeks. Your PSA is so low, I wouldn't think about adding zytiga after your chemo treatments. Then again I am not a doctor. I'm just someone whe went through the protocoled treatments and had great successed in the initial treatment. I am hoping that i wont ever need the secondary treatment for a very long time. Keep us posted.
I also had a gleason of 8 but my psa was 7 at the time of diagnosed ,May 2017, I was given the Lupron shot along with 40 radiation treatments , for the pelvic area. my psa was .1 in Dec.2017 , Ct scan showed no mets. I will be getting another Ct scan in April. I did changed my diet to mostly plant food and fruits, once every two weeks eat beef with 96% percent lean.eating only egg whites from a real egg, I wouldn't buy the egg whites from the store, I read they have other ingredients in it and use almond milk only but not drink it, for oat meal additive. I feel that I have to do my part to keep my psa at the same level which would mean no mets if I am doing every right. I did read that tomato paste is great to eat ,so we have spaghetti and sauce once a week. I have a small glass of V8 juice, low sodium too, every morning. after I got the Lupron shot a month later, It made me a little weak with no ambition but its been a little over 5 months and my muscles to have disappeared ,so I will start exercising. I wanted to start in Dec. but I got the flu that same month, every body seems to be getting. I will start walking in place to build my strength 20 min. a day and build up to 40 min a day. when I got the biopsy I had only one core sample out of 12 that was positive, I did catch it early but with cancer we have to fight as hard a we can, I hope this was helpful and something you can relate to , we did have the same gleason score.
God Bless
Robert
Hey:
Did they do a bone marrow biopsy to study the plasma cells. There is a % of multiple mielomas which are not secretory and tests can be negative.
If the cancer is PSMA positive still can be treated with Lu 177 PSMA which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease including bone metastasis.
There are at least 3 clinical trials going on int eh USA for castration resistant metastatic prostate cancer.
Please search at:
Clinicaltrials.gov for prostate cancer and Lutetium 177
The first things is to determine if the mestastasis are PSMA positive.
A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA got Ga 68 PSMA PET/CT:
Please search at:
Clinicaltrials.gov for prostate cancer and Gallium 68
My treatment with Lu 177 was in 2016. I had multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.
The treatment can kill cancer cells castration resistant and hormone sensitive in the bones or in soft tissues. Very well scientifically documented treatment.
My extensive spine mets are lytic as well. My doc didnt seem to care but the internet makes it out to sound super rare. I dont know if thats true or if its just underreported? Anyway, as farr as im told it doesnt really change much from a treatment or prognosis standpoint. They did confirm mine with a spine tumor biopsy to rule out regular bone cancer.
No cure for gleason 8. I have been fighting it for 16 years with multiple treatments. Best advice is watch out for the snake oils you read on the internet. 3 people I know died in 2 years because they abandoned drugs to try vegan or juicing or something else they read about.
I dispute that statement "no cure for gleason 8". Maybe you haven't achieved it, but diagnosed and treated early I see no reason one can't achieve a durable remission, if not a 'cure'. I am a year and a half in after a gleason 8 diagnosis.
I do not dispute a remission. I have gleason 8, had surgery at PSA=4. Came back several times after that. At 9 years out, I did Provenge, Radiation, and XTANDI close together, and got a 2 year remission at PSA less than 0.002 which is considered undetectable and almost a cure. I was running victory laps thinking I was cured and it came back again.
All my oncologists said same thing. Dont get your hopes up for a cure after failing 1st line curative treatment. They all said there is no cure after that, but good control with advanced treatments.
Your story is all too typical for many with this disease. It is my greatest fear. I just turned 68 so maybe something else will get me before this disease does. Best wishes on your continuing journey. BTW, this is the reason I am in the advanced prostate cancer zone despite my cancer not being advanced ... yet. I want to learn everything I can in the event that things do not go well.
Bone is being remodeled continuously. Osteoclasts break it down & osteoblasts build it up.
Serum calcium homeostasis depends on this. If blood calcium dips, calcium is quickly obtained from bone. The kidneys convert inactive vitamin D (calcidiol) to the hormonal form (cacitriol), & this triggers calcium uptake from the gut & ultimately, osteoblastic activity.
In cancer that goes to bone, osteoclast & osteoblast activity is usually disturbed. When osteoclasts dominate, the result is an osteolytic lesion - as is the norm for breast cancer, but not PCa, where osteoblasts dominate. [Note that most of the excess cells are normal bone cells.]
In patients confined to bed for an extended period, bone loss is common, due to reduced osteoblastic activity. In contrast, load bearing exercise stimulates osteoblastic activity & osteogenesis.
PCa bone mets that are osteoblastic do not require further osteoblastic stimulation, and it's unclear (to me, at least) whether such exercise would be safe.
But in osteolytic tumors, it appears that load bearing exercise may be beneficial. Not only is osteoblastic activity stimulated, there also seems to be an effect on the bone met environment.
The following is based on a human BCa model in a mouse. [1].
"To investigate the role of loading in bone-associated tumor formation and growth, we developed a new in vivo model that integrates mechanical loading with human metastatic breast cancer, and used this in combination with in vitro loading experiments to understand mechanisms of metastatic tumor growth in bone. In the absence of loading, tumor establishment and bone degradation in our studies was similar to that observed by other groups using intratibial or intrafemoral injection of cancer cells, whereas loading significantly altered these effects. Specifically, tibial compression dramatically reduced histologically detectable tumor formation and associated osteolytic bone loss. In vitro studies suggested that these effects may not only be related to loading-induced changes in bone cell behavior, but may be partially attributed to mechanically-induced alterations in gene expression in tumor cells."
...
"In conclusion, our results suggest that mechanical loading inhibits secondary growth and osteolytic capability of metastatic tumors by modulating relative osteoblastic and osteoclastic activities, though further work is required to fully understand the molecular mechanisms underpinning these results. Although our studies were designed to study the interplay between mechanical stimulation and secondary breast cancer located in bone, metastatic bone disease from other cancers (eg, prostate, lung) may be similarly examined using this model. In particular, future work exploring the ability of loading to alter a variety of clinically relevant scenarios, such as the prevention and treatment of bone-metastatic tumors, will shed further light on mechanical stimulation as a tumor microenvironmental parameter modulating the clinical outcome of patients with advanced disease."
I wouldn't think about doing anything more or anything else at the moment. It sounds like your cancer was diagnosed early on and is being treated very well with various forms of treatment. How often do you have scans and blood tests? If you are closely monitored than I would not think too far ahead.
Testing PSA monthly. Need to ask for bone scans when I finish docetaxel. Feeling good about treatment and response is not stopping me from looking for more or better. Reading this site has convinced me that there is some correlation between being informed and results.. I am a Christian, but I also subscribe to the old adage that God helps those who helps themselves.
Sounds like your doctor is throwing the kitchen sink at your cancer. Don't panic, I had a Gleason score of 9 and PSA of 39, stage 4. The lymph nodes on the side of my prostate proved positive at surgery. I was age 42 . After radiation I have been on palliative drugs for the past 20 plus years. When one stops working, move on to next.
Right after diagnosis I became a vegan. Since then I have slowly added some dairy, a few eggs and finally fish. I eat organic, no GMO's, added hormones etc.
BTW I get my fish through Vital Choice. It's expensive but you can really tell the difference.
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