Spouse/Partner Support?

5 Posts | Page(s): 1 

Spouse/Partner Support?

by PCWife on Thu Jun 21, 2018 05:08 PM

Quote | Reply

Hi, does anyone know of a board specifically geared towards the support of a spouse or partner?

All of the info hear is invaluable, thank you.  There are, however, challenges unique to the opposite side of this adventure...those of us closest to the patient.

Thanks in advance.

RE: Spouse/Partner Support?

by genemyers on Fri Jun 22, 2018 03:52 AM

Quote | Reply

I think often the spouses have it harder than the patient/husband who has the cancer. Sorry I do not have a board to recommend, but you might consider two alternatives:

The AnswerCancer foundation has a phone support group the first and third Tuesday of every month only for the caregivers of advanced prostate cancer patients. The moderators of the call are very knowledgeable. 

https://www.ancan.org/support-calls

info@ancan.org

 

The CancerCare foundation is a non-profit that provides free phone counseling and community referrals to help caregivers like you. They can give you free one on one support from a master’s level social worker. They can also refer you to supporting services in your local area depending on what your needs are.   

CancerCare 

800-813-HOPE (4673)

https://www.cancercare.org/tagged/caregiving

 

You may want to look into a treatment called Lutetium 177. It is kind of like Radium 223 but it does not go to calcium, but gets attached to PSMA which is overexpressed on advanced prostate cancer cells.   I have seen cases of men with very advanced disease where the psa goes to undetectable and the scans show no evidence of disease. This is a new and up and coming therapy.

Best wishes,

Gene

RE: Spouse/Partner Support?

by PCWife on Fri Jun 22, 2018 03:52 PM

Quote | Reply

Thanks so much for your message, Gene.  Comfort in a flash, for sure.  I've made note of both resources and I will be sure to ask the Dr about the Lutetium 177.  I'm not familiar with either treatment you mentioned.  Is the L 177 FDA approved, or is this a clinical trial?

RE: Spouse/Partner Support?

by genemyers on Sun Jun 24, 2018 03:09 AM

Quote | Reply

Here is what little I know, but my knowledge is far from complete, so verify and check out the information from other sources.

Most of the work and information on Lutetium 177 comes from Germany over the last 4-5 years. Lutetium is not approved in the United States, but is available in clinical trials.

UCLA has a trial going on where everybody in the trial gets Lutetium, there is no placebo.Same with a trial at Cornell University. There are probably other trials that I am not aware of.  This is a very hot topic in advanced prostate cancer because of the results coming out of Germany, where some patients who have failed every known treatment get the Lutetium, and their psa goes to 0 and there is NED (no evidence of disease). This is a very rare outcome for any cancer and has a lot of researchers excited.

So the question then becomes how to navigate the clinical trial access nightmare.

Ideally your doctor would be up to date on all of the hot clinical trials for their specialty: advanced prostate cancer. But unfortunately this is not going to be the case for most doctors (because they do not specialize and there is too much to keep up with). Depending on the doctor’s practice area, they may have never heard about Lutetium 177. So it might be up to you to bring this to their attention.

There is the clinicaltrials.gov website, but this can be hard to navigate, but you can try it.

Another option is the UsToo Clinical Trial Navigator. Here you can talk to a person who will help you research possible trials and accumulate options. Then you would take this information to your doctor. This is the approach I would take:

UsToo Clinical Trial Navigator

https://app.emergingmed.com/ustoo/home

The main barrier to clinical trials is the need to travel, if the trial is not in your local area.

Best wishes,

Gene

RE: Spouse/Partner Support?

by BethZee on Thu Apr 08, 2021 02:32 PM

Quote | Reply

would love this also.. I'm a PC Wife right there with you and here if you wanna chat.

5 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.