Thought I was holding it together - Advanced Prostate...

Advanced Prostate Cancer
10,548 members12,587 posts

Thought I was holding it together

Tub111
Tub111

I really thought I was scared 11 months ago when hubby was first diagnosed. Now today I sit here terrified. PSA test yesterday was eye boggling 207.1. One month before was 49.1. Month before that 5.3

Obviously ADT has failed.

Confirmed that cancer has regrown in prostate.

RO appointment today but will it be enough...or quick enough.

Will it provide QOL. Will it give him better results or the same butt kicking SE. Questions no one has answers for as each one of you are so uniquely different.

We’ve almost made it past initial “less than a year” mark and still aiming for the 18 month one but...

Biggest and longest cry we both have had since diagnosed.

Sheri (wife, caregiver, cheerleader)

47 Replies
oldestnewest
Darryl
DarrylAdministrator

You are not alone....we are all your (and your husbands’) brothers and sisters.

Tub111
Tub111
in reply to Darryl

Thank you Darryl. That’s the reason I come here.

Go to the Mayo Clinic

Tub111
Tub111
in reply to gusgold

Thanks Gus. So wish we could. Unfortunately funds are not available for that being here in Canada. House is already up for sale and I would take him to the moon for treatment in a second.

gusgold
gusgold
in reply to Tub111

If you can afford the airfare The Mayo Clinic treats a lot of people who have very little money...they are a non profit and do not turn away anybody

Whimpy-p
Whimpy-p
in reply to gusgold

In Az , Mayo tells me that in Az that it’s illegal for a person on Medicaid to been seen at Mayo Even self pay is not an option.They can’t legally accept me. I’m on the cheap plan Ahcccs= Arizona health care “ COST“ containment system . Thank God that I currently have no signs of PC and my meds and testing are free due to me being on a test drug. If I wasn’t in this test I think I’d be swept under the rug by now. This is A great reason to to on a test. I’m monitored and tested tri-monthly.. I don’t have a PC specialist... anymore We pray for no return . Nobody knows the future of Medicaid for those in need.. Enjoy you day...

Tub111
Tub111
in reply to gusgold

Thank you gusgold. We will put that on our list.

Sheri (wife, caregiver, cheerleader)

Whimpy-p
Whimpy-p
in reply to Tub111

Thank the Lord that he has you! 🙏

Whimpy-p
Whimpy-p
in reply to Tub111

I’m sorry . That is BS.. we also must sell our cabin in order to eat ..

Shooter1
Shooter1
in reply to Whimpy-p

Beat you to it. Sold family cabin and cashed old IRA to get by. Cashed in all of next years vacation days and paid leave days to get through last 2 mo. Then retired and am getting on with life. VA picking up cost of meds. Lucky we had assets that we could liquidate to stay off the street.,

Whimpy-p
Whimpy-p
in reply to Shooter1

I’m doing the same..Still, lucky to be alive.. Glad that you retired .. take care

Tub111
Tub111
in reply to Shooter1

Not the retirement we had all dreamed of for sure. As we own our own business we cannot retire as yet as it is our only source of income. Even permanent disability will not cover our costs as we did not contribute enough to our government pension through all the working years. Like I said liquidation is the only option unless he cannot take a move mentally or physically.

Sheri (wife, caregiver, cheerleader)

Whimpy-p
Whimpy-p
in reply to Tub111

I can relate. I’ve sold all tangible assets these past 4 yrs. We scrapped by with disability for three of those years. We’re praying for snow to fill the lake in Co. so we can sell our cabin this spring. Come to Az . Cost of living is low and plenty of health care. 9 months out of the year it’s pretty nice. Scott

Tub111
Tub111
in reply to Whimpy-p

We would love to be in AZ. Our friends have winter property in Mesa. Dry air is what his asthma needs! And the Vitamin D....

Whimpy-p
Whimpy-p
in reply to Tub111

Come to see us in Tucson.. a little smallerthan Phoenix , but beloved by Canucks ..and great 9months out of the year. If you become serious about Tucson I can guide you in most areas being that I’ve been here decades ... low cost of living , good health care , no snow shoveling or mosquitoes. San Diego only 6hours by car for summers. Or Colorado , 9 hrs by car..

Changes come with this dreaded disease.. My home is open to you and I can advice you and show you some local knowledge and support.. if you so desire it.. We have to make moves in a new direction. Change can be good.. Take Care .. Scott & Shahrnoosh😎. Around 70 degrees today...

Tub111
Tub111
in reply to Whimpy-p

Envious! Thank you for the wonderful extension of friendship. We may take you up on that offer. I loved AZ. Sedona was beautiful! Even the crazy random lightning/rainstorms are awe inspiring and mind boggling.

One more thing on our to do list after treatment...;)

Whimpy-p
Whimpy-p
in reply to Tub111

It’s always open. Much beauty in Az.

Dearest Sheri.disheartening news. I am sorry. It brings to mind the famous” scream” painting that most is us can relate to . The fear and anxiety of APC while it makes a run on us is horrific. I pray another tool from the belt dampens the pc.. Our mutual nemesis May God bless you both with love.. even in this darkest moment.. my hope is for him to get away from the suffering and to get back in that tub and take the winning flag again . Hang in there dear lady .. I’m praying 🙏

Tub111
Tub111
in reply to Whimpy-p

Thanks LuLu. You have been an amazing uplifting person through our little time on this forum. I appreciate the kindness you show and uplifting attitude you bring! No giving up , fighting the fight!

Sheri (wife, caregiver, cheerleader)

Whimpy-p
Whimpy-p
in reply to Tub111

Half of this battle is with ourselfs.. It’s absurd..

I don’t quite know what to say other than what you are going through is so unfair and I’m thinking of you. Puts things for me firmly into perspective.

Tub111
Tub111
in reply to Bcgkelly

Thank you Bcgkelly. I know exactly how you feel as I too read posts from others and just sit back and take it all in knowing this battle for all of us is overwhelming. Not giving up the fight!

Sheri (wife, caregiver, cheerleader)

Whimpy-p
Whimpy-p
in reply to Bcgkelly

I agree..

Whimpy-p
Whimpy-p
in reply to Bcgkelly

I haven’t found a connection between fairness and APC. Unless we admit that us men are all rotten bastards that deserve to suffer.

If you have some tech savvy kids in your life try to out your healthcare situation on social media. Don't you have univ e real he a healthcare a in Canada? Shame them. There are things that still m at be able to help. Sending love and alpha.

God I hate auto correct. Sending love and aloha

Tub111
Tub111
in reply to Carmen2

Thank you Carmen2. Our kids are 38 and 34 living away from our location with no real connection with us through this fight. Their dad has always been strong , healthy and has overcome many health issues (most brought on by his adventures and work) and I truly think they don’t “realize “ the severity of this. Denial?...most likely. Health care here is amazing in comparison to the US. But we are behind in many of the trials used down there so finding one can be challenging. Appreciate the kindness you have shown.

Sheri (wife, caregiver, cheerleader)

Check with Dr. Jeffrey Karnes at the Mayo Clinic in Rochester. He specializes in your type of case.

Tub111
Tub111
in reply to Gudgelm

Thank you Gudgelm. I will put that on our list too!

Sheri (wife, caregiver, cheerleader)

So still letting it all settle but yesterday’s meeting with our RO was both eye opening and informative. Apparently he has a “2.5cm hole” in top portion of left humerus which now coincides with what we initially thought was torn AC joint. Why we were never informed of this met we will never know. DRE confirmed prostate is large enough to cause pain sitting and feeling of constant constipation.

So plan of attack for current issues are one shot radiation on humerus and 10 rounds on pelvis and prostate area.

CT scan today, bone scan Thursday, in between this, radiation preps possibly this week to hopefully start next week sometime 🤞 plus MO appointment next Wednesday.

If this can just give some relief for now that is all we ask. He is terrified of radiation as he heard some bad stories from others and RO risks/warnings but trying to reassure him that it will not be as bad as he is over thinking it. I hope my cheerleader attitude has not clouded the possible severity of radiation?

Standing strong in the face of this evil fight.

Sheri (wife, caregiver, cheerleader)

Whimpy-p
Whimpy-p
in reply to Tub111

This Rt can push the pc back. It can (if it works properly ) stop the pain also.. The pain has got to go . Rt is what I’ve done.. it can do miracles. It causes fatigue and can weaken bones . I had 40 rounds of targeted Rt on prostate. With ADt it took the pain and all signs away . This is what he needs. Is he on Adt?? I believe Rt is the lesser of two evils considering chemo.

Tub111
Tub111
in reply to Whimpy-p

Yes I pray this will lessen pain. He has been on Lupron depot every 3 months along with Zytiga and prednisone. My zytiga rep is very concerned with the results too.

All will be known in a few weeks hopefully. Just got call for radiation mapping this Thursday and will start radiation on Monday. They worked him in extremely fast 🙏

Whimpy-p
Whimpy-p
in reply to Tub111

Good they got him in quickly. Let’s pray this improves..

Hi Sheri, I just read your posts about your husband's case and my heart goes out to you. The fear can be relentless and seems to overshadow everything that we do. I feel for you, I am with you in thought.

My partner was initially diagnosed on June 18th of this year with multiple mets including a very large one causing spinal compression. His PSA was 527 at dx. We knew nothing about this disease and the learning curve was very steep. Once he recovered from the surgery, my partner was given 10 radiation treatments to his neck and lower spine. The worst for him was the burn on his neck and in his throat but the pain from the mets is gone now. It had affected his shoulders, hips and neck.

I realize that everyone has different reactions to radiation but it certainly helped my partner with the pain and the difficulty in moving. In his case it certainly helped, for now.

Take care of yourself,

Carola

Tub111
Tub111
in reply to holgar

Thank you Carola. I appreciate the kindness. You are so right that every case and reaction is different. Overwhelmed is now a constant word in our daily vocabulary.

I pass on all info this forum gives me to him and can only pray that even if it’s only temporary relief of pain and possibly reduction of tumour size it at least gives him another fighting chance at another form of treatment.

Thank you for your response and prayers and positive thoughts to you and yours.

Sheri (wife, caregiver, cheerleader)

to: Sheri (wife, caregiver, cheerleader) and Husband.

Remember God is on your side.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/11/2018 9:31 PM EST

Tub111
Tub111
in reply to j-o-h-n

Absolutely!

Amen!

If he tested BRCA positive, there might be some treatment path involving a PARP inhibitor, such as Lynparza (olaparib)? Here is a link to a related clinical trial, which has many potential study Locations, including some at several Canadian sites.

clinicaltrials.gov/ct2/show...

(Note also the Contact Information in the above for the AstraZeneca Clinical Study Information Center, providing a phone number and email for possible use by yourself and/or inquiring doctor.)

You might also consider seeking a consultation with the Canadian research experts who are studying links between inherited mutations of BRCA genes and certain forms of prostate cancer. Perhaps Dr. Robert Bristow of the Princess Margaret Cancer Centre in Toronto.

prostatecancer.ca/Research/...

With proven bone "mets", besides external beam radiation, many men are also put on either Xgeva (denosumab) or Zometa (zoledronic acid) by their treating oncologists. Ask your doctor about such bone-protective options for advanced prostate cancer, metastatic to bones.

You might also find some face-to-face support and information in a Canadian Prostate Cancer Support Group. Here's a link to a Locator at the Prostate Cancer Canada Network website:

prostatecancer.ca/Support/S...

It's often said that with advanced prostate cancer that the absolute number of a PSA test result becomes more of a general indicator with advancing disease. The results and actual locations of disease progression on various scans, along with symptoms, and other markers (e.g. alkaline phosphatase), etc. become more important in the aggregate than the PSA result alone.

(BTW, when I was first diagnosed a little over 5 years ago, I was in some pain but certainly otherwise alive with a ridiculous PSA of 5,006. Successful treatments can take PSAs in the thousands or hundreds on significant "roller coaster" rides from highs to new lows again.

It's completely normal to be really frightened and anxious when seeing PSA results going up in ways you never expected. (Been there... Done that.) Hopefully, it may be coming from cancer cells that may be growing in relatively benign locations, and there could be the right amount of time for you to consult with the best available specialist(s), and to choose the best available next treatment option(s).

Talking about it here and in Support Groups can really help. Big Hugs and shared tears when they are necessary can really help, too.

Just some thoughts,

Charles

Tub111
Tub111
in reply to ctarleton

Wow. Thank you Charles. I will be doing some research today to arm ourselves with at the next oncologist meeting.

I do know that PSA is not my concern. His alkaline phosphatase, alt and ast are what I have been watching steadily over the two months. With a spike there I could see how quickly it has been traveling in his body. CT and bone scan results next week.

I am relieved for the quick response the radiation oncologist has given and we really liked her informative but caring manner.

How I wish none of us had to live this type of number fear. Age used to be the only number we all were afraid of...

Again my thanks Charles,

Sheri (wife, caregiver, cheerleader)

ctarleton
ctarleton
in reply to Tub111

Gregg57, who also posts here, has joked to me that instead of calling it a "Prostate-Specific Antigen (PSA) Test", they might also call it a "Prostate Specific Anxiety" Test.

Charles

Tub111
Tub111
in reply to ctarleton

That is too funny 😂. I love it!!!

See if your Cancer center has Quality of Life counselors available. Given their vast experience in dealing with this disease and it’s many victims, they can be very supportive.

Tub111
Tub111
in reply to Mkeman

Thank you. We will utilize any and every resource our cancer centers offer. First radiation appointment today but not sure they will start as he had a bad health weekend.

Sending my prayers & thoughts.

Ohhhhh Sheri and hubby.... I'm so saddened to hear what you're both going through. I'm hoping hubby is feeling better than earlier and was able to start the radiation today. The radiation should help the pain. My husband had radiation to 5 places back in 2004 and 2012 and it hasn't reared its ugly self yet. A lot more x's then your hubby though. Please take care of YOU in this whole process or you will get sick too. He's very important but without you well... than you're both in trouble. A longgggg hot bubble bath, laughing on the phone for hours with a good friend, etc. Clear your mind somehow for a few hours.

Most sincere thoughts,

🌼Jackie

Whimpy-p
Whimpy-p
in reply to erjlg3

❤️So true Jackie..

Peace and power to the both of you. Don't be scared by a number.

You may also like...