1st Post -New to PC but not cancer - Advanced Prostate...

Advanced Prostate Cancer

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1st Post -New to PC but not cancer

AuburnAngel profile image
28 Replies

Husband dx 2/13/2017 with aggressive prostate cancer Gleason score 8 (4 + 4), PSA 394. He had no symptoms, age 53, married 32 years (5/1985). Scans are scheduled for this week to see how involved it is.

I just crossed the 6 month milestone of recovering from uterine cancer surgery June 2017.

Fight we must!

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AuburnAngel profile image
AuburnAngel
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28 Replies

Sorry to hear your husband have aggressive prostate cancer. Most of us are in the same boat.

There are many avenues of treatment. Recently the FDA approved 3 new drugs, abiraterone, enzalutamide, & apalutamide. There are several immunotherapies (vaccines and PDL-1 inhibitors) in clinical trials and several clinical trials for Lutetium 177, a nuclear medicine treatment which could be very effective.

What scans did they ordered?

Fight we must, keep the spirit of fighting and be very proactive in the treatment.

Lot of luck

Raul

AuburnAngel profile image
AuburnAngel in reply to

CT & Bone scan on Tuesday. They have mentioned hormone therapy (Firmagon) and chemo so far. We're scheduled to meet with a med. oncologist to create a plan and a integrative medicine doc. All new to us.

in reply toAuburnAngel

Ct & Bone scan have low sensitivity.

Perhaps it should be better to insist in having a PET/CT study done, to determine the extension of the cancer and location of metastasis with precision.

Gallium 68 PSMA is one of the most sensitive, but they are other tracers they could use for the PET/CT scan. The Axumin tracer has been approved by the FDA and it may be covered by insurance. It has low sensitivity when compared to others.

There are clinical trials for Gallium 68 PSMA PET/CT, probably the most sensitive study.

Please search for Gallium 68 PSMA and prostate cancer at Clinicaltrials.gov, if you are interested.

Having a good idea of the extension of the disease a good plan of therapy can be planned including radiation therapy if it were necessary. In this case location of the metastasis becomes essential.

May be he does not need chemo. He could be treated con firmagon and zytiga and if it does not work then they could use chemo or enzalutamide or apalutamide. They could do radiosurgery to lymph nodes or the bone if there were metastasis in these places.

If the cancer is PSMA positive t 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.

There are at least 3 clinical trials going on in the USA for castration resistant metastatic prostate cancer.

Please search for prostate cancer and lutetium 177 on clinicaltrials.gov

The first things is to determine if the metastasis 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 .

Please search for Gallium 68 and prostate cancer on clinicaltrials.gov

My treatment 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 kills cancer cells castration resistant and hormone sensitive in the bones and in soft tissues. Very well scientifically documented treatment.

Anything please let me know.

best wishes

Raul

rkengen profile image
rkengen in reply to

Hi what treatment/meds you get for the prostatecancer and in pelvic bone? Thx

in reply torkengen

R:

If the cancer is hormone sensitive and metastatic, the treatment is lupron or similar plus zytiga.

If the cancer is castration resistance but there are not metastasis it could be treated with lupron or similar plus apalutamide.

If the cancer is castration resistant and metastatic, the treatment could be lupron or similar plus chemo.

Any of these treatments treats the cancer everywhere (systemic therapy).

Metastasis in the bone may be treated also with spot radiation or with radium 233 if needed.

If the cancer is metastatic (castration resistant or hormone sensitive) and PSMA positive it could be treated with Lutetium 177 which is also a systemic therapy.

Many avenues of treatment and some can be combined or done one after the other depending on the patient's response.

best wishes

Raul

Litlerny profile image
Litlerny in reply torkengen

Good morning, r

Since you mention pelvic bone mets, I assume you are in a similar situation as mine. I was Stage 4 at diagnosis in May, 2015. Went to the Mayo Clinic in Jacksonville, FL and started on Lupron (every 6 months), and daily bicalutamide with excellent results so far. I recently added a 6 treatment course of chemo with docetaxel as an adjunct to my ADT, and go up to Jax for #5 of 6 today.

You should have a medical oncologist and possibly a radiation oncologist on your team. They will help you determine the best treatment plan for your situation.

God bless you, and best wishes to you. You will find plenty of support and good advice (and occasionally not so good advice) from the people in this group.

in reply toAuburnAngel

Firmagon will knock it down! Very effective. By this time next year you’ll

Be an authority on all of this. Good luck on scans. Remember this can be dealt with .

AuburnAngel profile image
AuburnAngel in reply to

Thanks for the assurance, it all seems so overwhelming atm. It doesn't help that I'm also challenged with a traumatic brain injury. This is like learning a whole new language and it feels like there's so much to learn in a short amount of time.

in reply toAuburnAngel

I know what you mean . All the terms and acronyms. Don’t put to much pressure on yourself. It all will be simplified sooner than later.. You personally have survived a lot . Wow.. this stuff wasn’t in the brochure... You both shall need time to recover.. Please keep in touch many people do care.

Chiquis profile image
Chiquis

I'm sorry that you are faced again with the scary word cancer. You will find help from the great men in this forum. I'm a caregiver myself. I hope for the best outcome for you and your husband.

There's hope

Alone you are not👍

Sincerely,

Erika

AuburnAngel profile image
AuburnAngel

Thank you. 🤗

Wow! I too was 53 4+ 4 stage4 .Now 57 PSA>.04 no signs. Good job on 6 months recovery. You will understand APC because it’s hormonally run also. He will get to a better place with luck .Hopefully so will you on yours. We relate to you both. Much knowledge here. welcome to a help zone. Best wishes.

Any guestion you might have should be answered by our experts here. Peace.

Sorry you have the diagnosis that many of us here also have. My PSA at diagnosis was similar to yours and I had a great response from early chemo and ADT which is what your doctor is talking about. My PSA went from 463 to .19 in around 7 months.

So I agree with your doctor's approach. I also agree with T99 bone scan and CT to start, especially considering your PSA at 394. T99 bone scans still have pretty good sensitivity (around 83%). While not as sensitive as a PET CT, you probably won't need the additional sensitivity of PET CT. I'm not a doctor, that's just my opinion. If they don't find anything with the T99 bone scan and CT, you can always go to a more sensitive scan. I'd say that's unlikely to be needed.

Hope everything goes well, keep us posted on your diagnosis, treatment, etc.

AuburnAngel profile image
AuburnAngel

I'm concerned how all of this will effect him in his last year of college. I know we have spring break coming up and he was planning on working through the summer and then finishing his student teaching in the fall. He has worked so very hard for this and it's what he's been focused on. I'm the one doing any significant PC research atm and trying to remain calm.

in reply toAuburnAngel

I'm glad you are here and know that you are doing something really important for your husband. It's very important for all of us to learn all we can in order to make the best decisions possible. I wish the best for his treatment.

AuburnAngel profile image
AuburnAngel in reply to

Thank you.

in reply toAuburnAngel

I know a young lady that just graduated thru nursing school at the U of A in Tucson while fighting stage #4 breast cancer , chemo , double mastectomy. Amazing young women. I wish the same for your husband.

AuburnAngel profile image
AuburnAngel

Thank you.

Bobrat profile image
Bobrat

HT will stop the cancer growth until more effective treatments can be considered, the results from ct and Bone scan will give you direction of what you have to deal with. You have many good years ahead and many positive accounts of men that have lived with stage four will for a decade or more! Try not to worry to much! God Bless!

Litlerny profile image
Litlerny

Sorry to hear of your husband’s PCa and your own cancer battle. My wife and I have a similar situation. I was Stage 4 with one pelvic bone mets in May, 2015. Have been on Lupron and bicalutamide since then with excellent results . Recently added chemo with docetaxel and go back to the Mayo in Jax for #5 of 6 infusions.

My wife, who does public speaking for a living, was diagnosed with tongue cancer in late 2016. I became her caregiver while dealing with my cancer. She endured two surgeries on the tongue, had her throat slit from ear to ear to remove lymph nodes, and had 30 radiation treatments and 6 chemo treatments done concurrently. It knocked her down for a year. We spent 21/2 months staying at a wonderful facility called Gabriel House on the Mayo campus. While there, one of our little dogs died. It was a horror story. But, she is strong, resilient, cancer free, and back to work! So there is a lot of hope for good outcomes for all of us.

As others have posted, there are many new treatments and drugs that have been approved and are in use either individually or in combination, and the research is continuing.

Keep the faith, and take an active part in your husband’s treatment plan.. God bless you both!

AuburnAngel profile image
AuburnAngel in reply toLitlerny

Thanks for your response. Wow, that was a lot for the both of you to get through together. My husband has been my caregiver, plus I have in home health. Grateful we have each other to muddle through it all together. Do you have any tips to share on the how to be a better caregiver, while still in care? Wish you all the best!

larry_dammit profile image
larry_dammit

Hang in there, as you probably know a positive attitude is the best thing for both of you, will say a prayer for you guys. My oncologist went very aggressive from the start, chemo first. Has worked for me so far. 18 months and feeling good. PSA was .005 last week

j-o-h-n profile image
j-o-h-n

youtube.com/watch?v=5Qk9o_Z...

Good Luck and Good Health.

j-o-h-n Monday 02/18/2018 12:24 PM EST

Presidents' day.

AuburnAngel profile image
AuburnAngel

That's a good one to add to the playlist.

Thanks

AuburnAngel profile image
AuburnAngel

Can someone help better decipher this for me? I know some of it but not certain on some.

CLINICAL PARAMETERS: Age: 53, cT2c, PSA 393 ng/ml, Gleason 4+4=8, Volume: 51.0 grams, Bxs: 5L + 5R, AUA IPSS: 6/35, SHIM: 3/25

BTW We got through the CT and bone scan today and now to learn how involved it is.

erjlg3 profile image
erjlg3

Ooh my....AuburnAngel and litlerney.... my heart hurts for all you've been through and all you're going through.

I hope you have family and or friends to help some Auburn. Please continue to take care of you. The stress will take you down if not.... I'm sure you already know that.

Huge healing hugs for all 💖

Most sincere,

Jackie

AuburnAngel profile image
AuburnAngel

Thanks

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