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"Sue Saddened Wife" Continuation Thread 2

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Posted 7/9/2015 1:49 AM (GMT 0)
Please use this thread to continue the discussions(see update below) from the previous thread -- ("Sue Saddened Wife" Continuation Thread) -- which may be getting too long for the forum software to handle correctly.

Thanks,

PeterDisAbelard, moderator.

Please use the new continuation thread -- "Sue Saddened Wife" Continuation Thread 3 to continue any conversations going on here.

I'll be locking this thread in about an hour to keep it from becoming too long for the forum software to manage. -- PeterDisAbelard

Post Edited (PeterDisAbelard.) : 8/26/2015 9:31:51 AM (GMT-6)

Posted 7/9/2015 1:57 AM (GMT 0)
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Posted 7/9/2015 2:20 AM (GMT 0)
Krissy - Great news on your grades! I knew you were a SmartyPants!
I hope the Procrit info is information Antonia & Sue can use - things are so tough for them trying to get necessary medical appointments & treatment. I hate that for them.
Looks like with Paul's dental work coming up smoothies packed with protein will be on the menu.

Carol - Been thinking about you, please don't lose hope. I know you're so frustrated and it's difficult for Steve to dismiss his oncologists' words when he's so vehemently states his position. Antonia is very knowledgeable and I'm sure she has good information for you. I wish my husband would be more open minded about such things.

Beth - Is Gary on anything right now? I hope he can get his appetite back, it's really tough when you know he needs to eat and it's like trying to give a toddler broccoli! Actually, all the husbands here need to eat more!

Thinking of all & sending love,
Susan
Posted 7/9/2015 2:57 AM (GMT 0)
Gary is on taxotere again. His numbers are going down but very minimally. We take what we can get! I wish Steve could get a rerun of something. Knowing the frustrations you all are dealing with makes me appreciate our medonc that much more!
Keeping the faith along with all you gals.
Beth
Posted 7/9/2015 9:44 AM (GMT 0)
*Thank you Peter for forwarding this thread*
Krissy way to go on grades WOW! . I hope you take pride in the accomplishments.Thanks for procrit information , will be useful at hemotologist appt on Wed. Hoping they prooced with blood transfusion tomorrow any way as breathing is horrible! Developed a real bad pain in lower section of rib cage after his nap yesterday afternoon.Not sure what would do that so quick. I think zytiga has been a good choice for Dave ..not that there is a choice out of 10 treatments left . I hope today is pain free from that rib pain and that breathing settles down. Yesterday he said if this keeps just like this to get me 10-15 years down the road. I think he has forgotten crap prognosis from May. I see just s bit more of inability in thought process and sometimes words and sentences come out but in the conversation dont always make sense. Everyone have a awsome day ! Antonia hope you are breathing in smoke free air ! Hugs 💙 XOXO
Posted 7/9/2015 10:36 AM (GMT 0)
That grade is not indicative of my level of comprehension at all! If I was taking at MIT they would be using me to sweep the floors!

Never even thought about needing those powders for Paul soon due to dental surgery..... Doh!

My chicken salad made his teeth act yoyup and begin causing pain. Bad, bad wife for using pecans.
Posted 7/9/2015 3:45 PM (GMT 0)
Hi friends  five stages of grief 1 denial  2 anger  3 bargining  4 depression   5 acceptance.  I am having such a hard time with number five acceptance.  Steve has decided to stay with his oncologist and not go back to CTCA.  To accept Steve' s decision is so hard.  Now they have decided to go to U of M for liver radiation consult. I realize Steve wants everything and anything that can help but we have not even gotten a psa to see if the chemo from CTCA has helped.  I have to let go of the time and money we spent give up the hope we built up and switch to something else and it is taking a toll on my ability to accept. Is it time for me to step back and let go because that is what I want to do. Thanks to all and keep talking to me because it is helping.

What stage are you girls at and what stage are your husbands at? Carol

Posted 7/9/2015 4:00 PM (GMT 0)
Carol,
I am at acceptance stage of PCa, but not accepting no hope. Gary is right where Steve is, but psa is 900! Email me, it's in my profile. Maybe we can chat and get our guys to talk to one another.
You are always in my thoughts.
Beth
Posted 7/9/2015 5:08 PM (GMT 0)
Hi Carol; is Steve happy with the oncologist? Do you belueve in what he is doing for Steve? Dave told me he that he is happy with his Drs...Really? I think women demand better care men just accept care. Today I told palliative after he asked if Drs from breathing and respiratory got in touch with us, what is breathing tests going to be when breathlessness starts 2 weeks post last lood transfusion? So today he caved and Dave will get 1 unit of blood tomorrow. Carol Dave is stage 4 psa is at 2,835. Mets to liver on last ct scan.Using zytiga right now for the past 2 weeks. Prognosis given on May 6th 2-4 months . Dave is 64 diagnosed at 62with gleason 9/10 , psa at diagnosis was 80. Mets every where .All we have right now is HOPE. I always feel like they aren't doing enough and I always have to be finding treatments and secure coverage. 💙
Posted 7/10/2015 7:38 PM (GMT 0)
Hi Carol, I am not sure I agree with Kubler-Ross's staging as it applies here :) Mine is: Appear to accept, then analyse, argue, punch someone's lights out for daring to give a miserable prognosis, never give up.

Don, PSA shooting up, LDH way too high, ALP also way too high, (I will have all numbers shortly and add them) Dx Feb 2013 Stage IV with widespread mets that were confined to bone but probably now are not.

Not on any medication other than 1.0 dexa QD, and ibuprofen. The only thing his oncologists can agree on is that Ra 223 damaged his whole system. Starting 3-BP next week under less than ideal delivery protocols, which will initially be done by a professional and then at home by us. No other options available as I can see except for salinomycin, which is also on the agenda. In the palliative care program. Doc has no stated issues with our choice for experimental "sidelines" treatment. Severe cachexia. Currently running errands and doing food shopping, so he can get around.

Unlike Steve and Dave (and most others) Don is appalled by current medical therapies and protocols. At one point he was willing to have a low dose of chemo to reduce tumour load but they refused. Then they whine on about him not having chemo. Friend with very similar numbers did go for standard chemo in Feb and March and died five weeks ago due to severe liver problems that were not present before the chemo, which adds to Don's distaste of standard Canadian medical practices.

Whatever happens, we will have no regrets that we didn't go the right route for us. xx
Posted 7/10/2015 9:13 PM (GMT 0)
Ugh! my guy's albumin just dropped to 28. Not a good sign at all. I am just losing it at the moment. I kept saying, "At least his albumin is OK" as if this was something to hang onto. Has anyone else had albumin this low? What did you do?

Post Edited (Moonlitnight) : 7/10/2015 3:20:42 PM (GMT-6)

Posted 7/10/2015 10:43 PM (GMT 0)
Antonia - Such tough news today for you both. I hardly know what to say and I have no knowledge what to do. I can only offer my love and support while wishing there was more.
I emailed you.
Going to search on line (as if you hadn't already)
Much love to you both
Susan
Posted 7/10/2015 10:45 PM (GMT 0)
Thanks Susan xoxoxox
Posted 7/10/2015 10:45 PM (GMT 0)
What about this site? http://www.webnat.com/articles/Albumin.asp
Is Don having edema? Is he perhaps dehydrated?
Posted 7/10/2015 10:48 PM (GMT 0)
No edema but could be dehydrated. Our dog was and had to be injected with water subcutaneously. I will go check this out. It seems odd it suddenly plummeted with extremely parched air due to forest fires, excessive heat and no rain for over a month. I'm grabbing at straws. He has malnutrition - the more likely cause. I think that dehydration INCREASES it.

Normal in Canada is 35-50 g/L. Don's is suddenly 28 (it was 37 last week). Your Don's is 32 in our numbers, Susan. His oncological naturopath just gave him two units of Aminosyn.

Post Edited (Moonlitnight) : 7/10/2015 10:27:13 PM (GMT-6)

Posted 7/11/2015 12:04 AM (GMT 0)
The other thing is that for the past six days, I have been giving Don acetaminophen and codeine instead of ibuprofen. This is because we were starting the other therapy this week and it is more effective in the presence of acetaminophen due to depletion of GSH in the cancer cell. Yesterday, I put him back on ibuprofen as we are not due to start until next week. Acetaminophen can apparently lower albumin levels. (Grabbing at another straw). He just had a very large sandwich.
Posted 7/11/2015 12:19 AM (GMT 0)
Aminocyn should help him out - of course I had to look up exactly what that is! Which is good cause you always educate me whether you realize it or not & I thank you for that.

And good to hear he's eating - looks like you're covering all the bases.

Keep your faith
Posted 7/11/2015 4:36 PM (GMT 0)
Antonia ; thinking abot your Dons levels and hopefully they have come up. Dave ended with 1 unit of blood yesterday. Today he is far from feeling well. Very fatigued and more pains than before. I am hoping the zytiga is killing cancer cells and that could be the pain causer. Trying to stay ahead of it with the breakthrough Hydromorpone. I hope and pray all our great husbands can enjoy life and be with us all for a long time. The hemoglobin level of Daves had just slipped to 92 buf was so short of breath and dizzy. Will find out from hemotologist what her take is on hemoglobin levels as I question 80 being where everyone needs transfusion, maybe some like Dave need it before that #. I see no point in running levels right down when you are going to tranfuse any way Well I am going down town to see a freind of mine who was diagnosed with colon cancer and is having surgery for that on Mon . She had breast cancer 2 x and has had double mastectomy. She had turned 70 2 years ago and had asked shouldn't she be getting a colonoscomy but her G P said after 70 she doesn't need to ...What does age have to do with ? Cancer can always find another way ? What in the H was that miserable Dr thinking.? Wait they really dont want to find cancer with screening! , So ii will try my very best to give cheer even ththough I will cry when I see her . As I utter the words hoping it will be alright ,I will be praying that it will be at the same time💙💙💙
Posted 7/11/2015 5:12 PM (GMT 0)
Ah Susan, thank you so much, and for your email. He is feeling good today even though his knee hurt him a little in the night. I acquired some dexa and he is on 1 mg daily. The oncologist said no to dexa some time ago "because we don't like to give it for more than four days." This when they had some hideous prognosis so WTH does it matter? I was able to get some immediately from three sources: the GP, the naturopath and online so why are these oncologists so ridiculous? What are they scared of?

Sue, ((hugs)) for you. It must be heartbreaking for you with your friend's diagnosis. I don't know if Don experienced any pain on Zytiga, but he felt ill and his PSA continued to rise. Xtandi was far worse. I am glad he got his blood yesterday. (Thank you to all these wonderful people who gave this blood.)

Did you ask about EPO to boost Dave's RBCs?

I am trying to find natural GSH depleters for cancer cells as I hate the idea of Don having more acetaminophen and a GSH depleter is important for this treatment to work effectively. I have nigella (black seed) and curcumin. The treatment starts Monday, then I have to learn to do IVs myself, which should be entertaining. I am going to ask that Don get a PICC from somewhere to make it easier. We must be VERY careful and scrupulously clean due to the lowered neutrophils so a PICC could be an issue. I am sure Krissy will have something to say on that...

Wishing you all a great day and your guys improved wellbeing. xx

Post Edited (Moonlitnight) : 7/11/2015 11:45:58 AM (GMT-6)

Posted 7/12/2015 5:35 PM (GMT 0)
Has anyone been prescribed something stronger than OTC loperamide for diarrhea? Don has it pretty well all the time - sudden and explosive. It makes going out very challenging. I am trying to get 3000 calories into him, but cannot without adding olive oil to his smoothies and that sets him off all over again. ALA, metformin, you name it - all give him diarrhea since the appallingly destructive Ra 223. I am glad we are two months past the, "Since it looks like you are likely to die during treatment" shelf date remark from the Cancer Agency.

Check this video out. Wouldn't it be nice if we could all have this treatment, and not the chosen few? http://www.theglobeandmail.com/life/life-video/video-from-stage-4-cancer-and-back-an-immunotherapy-story/article22387373/
Posted 7/12/2015 8:16 PM (GMT 0)
Antonia, I realize Don isn't on chemo but knew this site would have info on this problem:

http://chemocare.com/chemotherapy/side-effects/diarrhea-and-chemotherapy.aspx

I hope there is something there - (tincture of opium mentioned)

http://www.drugs.com/cdi/opium-tincture.html

xo

Post Edited (myman) : 7/12/2015 2:27:39 PM (GMT-6)

Posted 7/12/2015 8:37 PM (GMT 0)
Thanks Susan. He is doing and eating by the book to stop it, except for two kale leaves for his platelets. I will ask the palliative doc for a stronger anti-diarrheal. Thanks so much. He is not at all well today. Been sleeping all the time. It's the diarrhea. Knocks the wind out of his sails big time.
Posted 7/12/2015 10:27 PM (GMT 0)
So sorry to read (keep reading ) this thread as you are all having such a difficult time. I've always felt that we are living from week-to-week with this disease and then I see folks literally living hour-to-hour (in terms of what's next).

I'm also irritated because I suspect RA 223 is in my future some day. I keep reading what a wonderful miracle drug it is with minimal (or maybe it said small) SE. Then in this thread we see the REALITY.

Good luck all. You are all so courageous and keeping up the fight!

Mel
Posted 7/12/2015 11:27 PM (GMT 0)
Thanks Mel (again). We were actually told by someone at the cancer agency a year and a half ago that in their experience with 14 men, Ra-223 had not worked for any and,in some cases had made things worse. However, our local oncologist said one of his patients had benefitted. We decided to trust that, since Don's experience with regular radiation on the base of his skull had been very positive. Big mistake.

One day, Don will be good, the next day not, and it seems to hinge on the diarrhea (which the radonc attributed to the Ra223 even though it's half-life is 11.2 days or something like that and his last shot was in Feb.). What really worries me if the accompanying burping as this can be a sign of pancreatic or liver trouble.

Tomorrow is a new day...
Posted 7/13/2015 3:48 AM (GMT 0)
Has anyone at all looked at the data from RA223 to see if they even published accurate data? Working on my stats class makes me wonder... and think about other drugs where they hid the negative results or data or manipulated it to be favorable......

I hope all had a decent weekend. My daughter is here- she wore me out shopping in between me doing tons of stats homework. I am still at a loss to describe how I am doing so well because I am lost in the formulas! I seem to guess very well.....
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