"Sue Saddened Wife" Continuation Thread 2

Susan, thank you. I am so pleased that your Don is able to get around and about without huge SEs. That's just brilliant.

Sue, I am so sorry that the abi doesn't seem to be working. Was this done in a different lab? The jump seems rather high. Is there any chance this could be lysis? Dr. Myers mentions that some treatments can cause a big jump in the PSA - he says chemo in particular - followed by a big fall. Hang in there kiddo!

Mel, thanks for the advice. Yes, he has misread the situation but no way would he recognize this. He seems to be full of himself and how incredibly helpful he is. He told me off for looking at my watch (I had no idea that we were going to be called in for "the talk" as we were there for a transfusion and were hauled in because one of the surgeries he assists at was cancelled. I had five minutes left on the parking and had been given a ticket the day before.) When Don told him I wasn't feeling good (I was wearing a mask as I have a bad cold) and that I had a deadline, he came back with, "This is not about your wife; it's about you." Also, when Don said, "My wife knows what she is doing in terms of care and she does a lot of research." he came back with "All my patients do." Everything seemed to be a putdown or something antagonistic.

Moonlit:

After reading your elaboration, it sounds like more than a misunderstanding. The guy sounds like a first class jerk. Why treat vulnerable patients like that?

The only doctor I ever fired was a local urologist who thought he was a HE.

I'm sure you will analyze what, if anything, this doctor brings to the table.

Would it be feasible to fire him? (ie: do you have an alternative doctor with the same specialty?).

Mel

Moonlit:

You are not alone dealing with nitwit docs. I bet almost all of us can relay similar occurrences. Unfortunately, you are at such a critical stage of this journey that Dr. Idiocy is magnified.

The idiot I fired had me scheduled for a biopsy BEFORE my first visit. My regular doctor had sent me there due to a rising PSA. He also had a serious temper tantrum when I said I was first going to consult with U. of Mich before deciding to do a biopsy. After further tests, I decided to do the biopsy at Umich. He lost it again and said that if I had PC, HE had better be the one to do the surgery. I left his office with a smile, knowing he was no longer my doctor, whatever happens. I have a very humble caring local urologist now, who is 100% willing to follow the advice of my medical oncologist, Dr. Lam. I could not imagine the first guy doing that.

So, different name and person, but same mentality.

Good luck again.

I'll go back to lurking!

Mel

Mel,
I am so happy that you continue to follow this thread. Sometimes I feel like the 7 or so of us regulars here are trapped in a bubble of despair and searching for answers, and you come along and pop it and say "there are others out here that are with you and care about what your going through". Thanks Mel!

Carol, my heart goes out to you. I thought chemo issues could be quite prolonged. Things are frightful here. Just frightful. We have to go in and get more blood as he can barely walk and has a headache. Couldn't eat at all last night. I am dreading seeing that a** of a palliative doctor who has his files. I am sure I will let fly. I am supposed to be at work but this just isn't happening as it is doc's appointments all day including the urologist. Praying he can help with the catheter issues. I'm sure he will say Don is too weak for a turp. One look at him and "it won't be worth it" will go through his mind. Have a great week all and keep at it. We are all rooting for each other. xx

Antonia my heart is busting for you as I read your posts. I don't know what I could ever say to you to help . BUT here goes ...Breathe...remind a hole Dr this is Don your husband and he is ill. Right now above anything else from you he needs your compassion . You simply can't tell a vegetarian to go and eat 3 hamburgers to feel better . Doing so would have his innards in a major war and it will be you cleaning up tne dreadful diarrhea that would ensue. Tell him to think before he speaks.Pretend that he is during this appointment Don and every word he is saying is as if he was saying it to himself. Just how would he feel ? How would his wife feel if it was her listening to the Dr say those things. I think part of med school they should have to take a class on what it is like to be the patient living this night mare. I for one do not know how any of us really cope . Our men live it sleep it every second and for care givers we do all of this plus try to keep home and hearth and appointments all working . Then some are working as well ( I have no idea how you who do are) it is mind blowing!
So for us today our oncologist heard that we aren't sure if he is doing everything he can ? He tells us he is but then says Dave has stubborn PC and he has always done what he can ...But has he this zytiga we asked about yet he said he had talked to the other oncologist I Toronto about that 2 weeks
before . So when were we going to know or be clued in. The xofigio if I hadn't put Daves name in for a drug trial and then we got it compassionately? In my Ibox I have the study out of MaMaryland about using zytiga with chem because the type of PC Dave has will probably never respond to hormone sensitive drugs . But he won't do it or try because he is not thinking outside the box . I am thinking ahead of what they have and it drives me crazy to think Dave will die because they won't go to what course I feel and advanced medicine thinks will work . Am I going to watch my husband die because he 1 year ahead of sequencing in drug treatments that could save him? Its sad and scary all at the same time .I will give the zytiga no more than 3 months to work and I have demanded today bone and ct at the end of 2 months because a pattern should be established if the zytiga is working. The zytiga nurse called and said they don't reccomend psa testing for 12 weeks but in Daves case 12 weeks could equal a psa of 15,000 or higher . This comes right back to the start of all this when a certain nurse practitioner said Dave didn't need psa testing. ..to young to worry about PC, Looks to healthy! Doesn't reccomend it and here we are deja vu all over again!

Good morning friends.  Steve had his oncologist appointment yesterday and had to get two units of blood as hgb was 7.1 and platlets was 87 and he had several bruises due to low counts.  The good news is everything went good.  The doctor was new to us and he was good paying attention to what Steve reported.  We were also able to pick up the CD;s from Steves scans to carry with us to next consults. It took over seven hours total and than Steve came home ate and went to sleep.  Hope today he feels better. Not the way I want to spend my day off and I get to repeat it all tomorrow as we go out of town for the clinical trial consult.

I asked this oncologist how much "extensive liver mets was" as to did it effect 25 or 50 % of the liver?  He said it is hard to tell what the radiologist ment when he read the scan but maybe 50 % but he thinks probably only 25 %.  I wonder what they would write in the report if it was 75%.  He had no idea and did not want to admit it. I will ask at next consult

Give your special man a hug and than do something nice for yourself, I am off to work. Carol

Oh God, Sue, (((HUG))) I am just in tears reading this. It makes me so ill. This morning, we turned up for the latest shot of the drug that cured (yes cured) two of the pubmed case reports literally at death's door and were told that it isn't working for Don. NOTHING has worked for Don and they said the cancer is progressing fast. He looks terrible and is so weak. We aren't even in this palliative care program as the Grim Reaper doc is always too busy with other patients. Last night we cried together for the first time. I adore him and don't want him to be sad.

I am presently sleeping on the sofa as he likes it scorching hot with no air and I like it breezy and cold. I creep up the stairs and touch him constantly. If he wakes up I just tell him I came to give him a kiss.

Antonia I just have no words to ever help with the despair you are feeling. If I was there ((Hugs)) .The rotten thing is I know we are not far behind as we literally run out of treatments. I know the oncologist when he sent us to palliative care was pretty much saying I can't or won't find anything for us. That was in October . When you start this battle I don't think any of us are filled in with enough knowledge and skills to demand the treatments and care .
Well we haven't had a great day yesterday that we were hoping for after blood transfusion. Dave developed pain in his right side that wraps around to his back .on the left side I can feel a very inflamed lymph node and edema in his ankles has reared it ugly head. So I am putting him back on water pills this morning. 2 aday for a week then will back off to 1 a day for week 2 .hopefully that will work.
Thinking of you all today. There is no alone in this all of us know only all to well what each of is living with. It is hard for all of us . I often wish for our old life back, it was not perfect but it was life . They say you shouldn't allow cancer to consume your life. That simply has to be written by some one on the outside looking in. When its your husband there simply is no other way that you could ever live and say that it isn't with you every waking moment. A husband who is ill is no diffrent than having a child ill they are just larger and require more TLC.
Love and Hugs to every one 💙💙💙 XOXO Sue

Antonia - Since meds (natural or otherwise) can affect the LDH result is it possible this may be the case with Don? http://www.lymphomation.org/tests-labs.htm#LDH
Still learning!
Susan

Good Morning Friends  We went to U of Michigan for clinical trial consult. They had two things to offer one- SEA CD40 which 'using the basic info' turns on the immune system to fight cancer cells. It is in phasse I trial and is a national trial so they have a list of patients to get on it.  They do not know when it will become available as to who gets the next name or how many names on on the list. They added 50 patients last month and Uof M got six.  It has shown promise with breast cancer and colon cancer not so much with prostate cancer.

The other one was the same one CTCA offered.  With maybe some extra.  They will do a liver biopsy and if it is small cell cancer they will treat with Carboplatin and Taxotere togeather. Steve had one cycle of Carboplatin and got so sick he says no more but I know when thay say it all the have to offer he will take it.  Oncologist did say they are seeing great results with low dose chemo and will probably do that with Steve and it is less side effects.

He was a great oncologist who I could tell was super intelligent but still talked down to our level so we understood.  He gave just enough info for us to go home and research and talk but not so much it was over our heads.

One thing he said is the clinical trial biopsy would take 4 to 6 weeks to schedule and if he did it through our insurance it could be done in one week and the way Steves scan looked and his lab work he said we did not have much time to work with.  He had seen some liver cancer double in one week. It was a scare to hear him say it.

I am digesting all this info. We still have the radiation consult on Aug 11. Every one of you take care of your self and make a chocolate cake for your hubby and eat a big piece your self because it makes you feel better. arol