HealingWell
Search Close Search
☰

"Sue Saddened Wife" Continuation Thread 2

Support Forums
>
Prostate Cancer
✚ New Topic locked
1 2 3 4 56 7 8 9 10
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/2/2015 8:32 PM (GMT 0)
Don is feeling the worst ever. Cannot get off the sofa and completely whacked. Not much to do I guess...
Posted 8/2/2015 10:30 PM (GMT 0)
Carol - Don is getting the Taxotare/Carboplatin combination and it is working for him with not much of a problem side effect wise - if he exerts himself he gets short of breath but not struggling for air, taste changes, he sleeps more and of course constipation can be an issue. These things become less of an issue after about 10 days. He also gets a white cell booster (Neulasta) 24 hours after chemo. He just had his 3rd cycle Friday. His PSA is now 2.6 and labs are improved. His oncologist switched him from Jevtana when a CT showed the liver lesions had continued to multiply and his psa had increased to 63.40. After 4th cycle he will have another CT to see where things are then. I sure hope Steve can tolerate this combination and it helps him, too. And yes, the chocolate cake was awesome! Thinking of you both.
Antonia - I so wish that we could ease your worry and your Don's symptoms - sleep is good for him perhaps helping him gain some strength. You know your man and his normal routines, behaviors, his sounds even! You're looking for something normal. Well, I am hoping he gives you a sign that he's ok because even in the midst of this crappy disease there can be hope. So sending you hope and love from Florida, Antonia.
Sue, you said "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" That is so true and I'm very thankful for this place and women like you.
Beth, Krissy & all - Keeping you in my thoughts and hoping all is well!
Susan
Posted 8/2/2015 11:19 PM (GMT 0)
I think the "don't let cancer consume your life" could be said earlier on in the game. Right now, it consumes every waking second...

Susan, Don's figures and handling of the SEs are awesome. Steve will hopefully follow suit, along with Dave. xoxoxox to all
Posted 8/3/2015 3:49 AM (GMT 0)
How can something that is in front of your face every moment not consume your life.  I have to move it out and put something in front just so I do not go crazy.

When Steve was on Jevtana they reduced the chemo 20 % so side effects were less.  I think that is what the new clinical Oncologist is saying.  Low dose chemo when they are combining two kinds of chemo sounds like it could work.  Steve had one full dose of Carboplatin and was very sick. I think he is scared to try it again.

Clnical oncologist said when cancer metastasize to liver it has shown to be small cell carcinoma on the biopsy and he has seen it grow very fast. than he said we have to more fast to get Steve on a treatment.

When I come home from work at 11 at night and steve is sleeping on the couch it is so hard to wake him up.  My heart beats fast and my feet do not want to move. I pray please be ok please be ok. My friends I feel deep in my heart for what each one is going through. Carol

Posted 8/3/2015 6:07 PM (GMT 0)
Ah Carol...such a poignant post. It is good that Steve is able to tolerate even smaller doses of chemo. We are battling severe cachexia. It is hard for me to grasp this disease. I get that it is to do with cytokine output but the "I don't feel like eating" always gets me hot under the collar. I was brought up to regard food as nutrition and not pleasure. If I didn't, I'd weigh 800 pounds and live inside a chocolate cake. Don has to "like" what he eats. I agree that it helps to like what you are eating but this just seems crazy to me. But yes, yes, I have to remember that it's the cytokines talking. I find this constant struggle is wearing me down and I have to be fit for him. Every day it's another migraine and extreme weakness. So when I read the first part of your post, I realized that I am not doing this. It is ALL cancer/work/cancer/work/attempt to clean up/shop/work/cancer. So I guess I have to go for more walks - or ANY walks! Sending you much caring, Carol. Hugs to all. xx
Posted 8/3/2015 10:55 PM (GMT 0)
Moonlit,
The nutritionist at the Cancer Care Center has told Frank that it is his "job" to eat and when I remind him of that, for some reason, it really helps him eat/drink the nutrition he needs.

Always following this thread and keeping everyone in my thoughts.

Lisa
Posted 8/4/2015 7:53 AM (GMT 0)
Hey Lisa,
Great to see you back on the forum. How is Frank doing?
We have had a lot of family visiting this summer so I haven't posted as often, but I very much appreciate all the support and kind words.
Carol, thank you for relaying the recommendations given for Steve. Based on that I plan to ask our doc about carboplatin. Hopefully he'll give it a try with Gary along with the chemo.
Still keeping my hopes and prayers going for Steve and both Dons and Dave as well.
Beth
Posted 8/4/2015 11:40 AM (GMT 0)
Well liver mets are rearing their ugly heads! Right side pain going up towards shoulder.What really worried me last night was when Dave asked me if I was going to work early this morning. ...WTH I haven't worked in almost 2 years but he sounded so not there when I gently reminded about not working. To bb frank it was very worring and so not him. He is usually sharp on everything, and days and months he is confusing. He asked me where one of his aunts lives? Small things but I am now fearing brain mets. I did email a Dr Tu at MD ANDERSON in Texas , of course he is on holidays but back around middle of the month so by then I will have new bone and ct scans to fax him as well as current psa and bloodwork. I would like his take on they way he would treat all of this. What he would do next as obviously we are not being offered any thing here. The toxicity of liver mets is of grave concern and I am not stupid that they can just try not to do anything about those. We actually have nothing this week and just next Monday get blood work done .There won't be PSa until the 19th and by then it very well could be over 8,000 given it went up by 1,112 in just 1 week. .So hoping everyone has a good week , Hugs and Love💙 XOXO
Posted 8/4/2015 1:33 PM (GMT 0)
Lisa thank you so much for those words of advice. Don is doing terribly. Just awful. I hope Frank is OK. It's been too long since I wrote but I know you will understand the whole time factor.

Sue, darn, darn. At least Dave doesn't have cachexia. Don is literally skeletal now and cannot walk more than a few steps. The cachexia is more of a danger than the cancer and no way of reversing or halting it. I pray Dr. Tu comes up with something helpful.

Hugs and best wishes to all.

Post Edited (Moonlitnight) : 8/4/2015 8:39:52 AM (GMT-6)

Posted 8/4/2015 1:53 PM (GMT 0)
Thanks Beth. Frank is spending the greater part of his days resting on the couch in our family room. He is awake about 4-5 hours/day. He says he likes listening to the sounds I make moving around the house taking care of everything. To be honest, the last two months have been the hardest I've ever gone through...
The docetaxel did more harm than good for Frank and he says he will never do anymore chemotherapy. His PSA and other numbers started rising almost immediately after his 6 cycles. Now we are onto Xtandi. Frank had stents placed in his ureters last Wednesday to reduce the blockages. The pain meds that were prescribed altered his mental status, he was having trouble with reality/dreams/hallucinations...it was a long 2 days while the meds worked there way out of his system. Have you ever tried to reason with your husband when they are high on narcotics? Well, it's next to impossible!
Mostly though, I had to remove from my life the one person I always thought I could count on. My counselor at Palliative Care says sometimes a person will make themselves so toxic because they don't want to deal with illness/death, so I needed to move on without her. I've known her all my life because it's my sister and I am very sad.And hurt. Seems the circle is getting smaller as we spend more and more time in our home.

But, as Elizabeth Taylor once said..."Pour yourself a drink, put on some lipstick and pull yourself together".
That's what I'm trying to do.
Thanks for listening and hugs to all of you fine women.
Lisa
Posted 8/4/2015 2:36 PM (GMT 0)
Lisa, my heart feels like it is breaking - for you, dear friend. I just don't know what to say. I agree with your PC counsellor 100%. It is a form of self-protection and denial on the part of your sister, but it is very hurtful and sad.

I am so sorry the docetaxel didn't work as hoped. I hear this more and more - not just for the chemo drugs, but for abi and Xtandi as well. Those two were the worst for Don. He literally changed for the worse in the couple of weeks he took Xtandi. So we went another route...a drug in development that requires special delivery which is challenging as it is very unstable. It appears to not be helping either - at least not for us although many stage 4s have appeared to lose the disease completely. So this crazy PCa continues to have its way. I am always puzzled (and pleased) that these drugs do work for some and I think that we need more research into enhancers for cell transporters such as MCT-1, or glutathione depleters, before we will see many of them work more effectively. Right now, they are being rushed to market "as is" after trials that favour the developer and so often result in disappointing results when in actual use. Sending you and Frank much love. xoxo

So in the end, all we have is hope and the challenge of not only trying to help our husbands but also maintain some semblance of sanity and healthy living for ourselves.
Posted 8/4/2015 3:02 PM (GMT 0)
LOL  I am sorry but when I read "live inside a chocolate cake" and "asked me if I was going to work early this morning. ...WTH I haven't worked in almost 2 years"  and "Have you ever tried to reason with your husband when they are high" I had to LOL. It is amazing what we go through. I know it is hard and sad to live our lives right now, but some times it is funny. Thank for sharing Carol
Posted 8/4/2015 4:54 PM (GMT 0)
Oh gosh, here we are together. Trying our best to walk through this "hardest thing we'll ever do" being brave and scared and weak and strong and kinda angry and loving all at the same time. We are pretty freaking amazing, aren't we?

And sad, I forgot sad. Well, we know all about that feeling.

Lisa, so sorry to hear that about your sister, that is more than difficult added to everything else. But sometimes that has to happen - it's just the way it is. I hope someday things will work out but some things have to be the way they are. Franks decision for no more chemo, difficult yes, but it's hard to justify chemo when the benefits do not outweigh the suffering he experienced. My heart goes out to you both and I appreciate you sharing that because someday that will be us.
Sue, Yes the liver mets are very scary and seem to grow quickly. I read the info on liver met symptoms and some are the same as the SE's from chemo! Really, it's like we have to be rocket scientists to stay on top of everything...and I am NOT any kind of scientist, to be sure! I hope you get a good response from MD Anderson soon.
Carol, I laughed at Antonia's comment about chocolate cake, too. We do have a sense of humor here on top of everything else! I'm curious about your comment re the small cell carcinoma in the liver. Is that still pc or liver cancer?
Beth, I think it's worth asking about adding the Carboplatin for Gary - so far Don is having a good result. Now I wonder, is that only WHILE on the chemo? I guess we'll find out! Your hopes and prayers are appreciated, TY.
Antonia dear, I've read up on cachexia and yes, it is frightening. So hoping Don is able to "do his job" and eat something. It seems such a simple thing, doesn't it? But when one has no desire or the normal hunger that drives one to eat...that is difficult to combat. I so wish there was an easy answer for you both.

Thinking of all of you Caregivers and hoping for the best for each one of our men,
Susan
Posted 8/4/2015 5:38 PM (GMT 0)
OK, here is the recipe I've used for a smoothie that Frank actually will drink willingly because it tastes so good.

Into a blender add 1 cup orange juice, 1 cup milk, 1 teaspoon vanilla, 1/2 cup protein powder, 1/2 cup powdered sugar, 3 oranges(peeled and sectioned), hit the smoothie button for 10 seconds, then add softened whole fat vanilla ice cream almost to the top of the blender and smoothie again. Tastes like an orange creamsicle popsicle. I also do it with 1 orange and a bunch of pineapple or strawberries and bananas. I ignore all questions of whether it is healthy or not, am just going for taste and calories as Frank currently weighs @ 120 pounds. When he wants it thinner, I just add water and resmoothie or add crushed ice and a straw. This is the one thing I can always count on him to consume. Make a blenderful every day and I offer it whenever...

Lisa
Posted 8/4/2015 6:33 PM (GMT 0)
Thanks for the recipe, Lisa. Don is having organic almond milk, chocolate flavoured. He doesn't like anything sweet except for strawberry rhubarb cobbler on occasion. I made him a rich smoothie yesterday, with just a banana for sweetness and he enjoyed it - then got diarrhea three hours later. We cannot use any protein powder due to the high glutathione content, which messes with the therapy he is on. He is actually on glutathione depleters - acetaminophen (UGH!) and some natural ones as backup. So I am trying to get chicken and salmon into him. He is having IV amino acids, which help.

Later:Just had the palliative discussion with our GP. WHAT A DIFFERENCE from the Grim Reaper doc. Kind, understanding, hoping for a cure, very positive but at the same time getting it all done. Paperwork signed. Phew! He also mentioned another palliative physician he'd spoken to and really liked so he is giving him a call.

Post Edited (Moonlitnight) : 8/4/2015 2:13:19 PM (GMT-6)

Posted 8/4/2015 8:12 PM (GMT 0)
Hi Susan  some of the info I am digesting in small form is when the host cancer cell spreads and lands and starts growing other cancer cells it can change the dna sequence. Such as it is a psa cancer cell 1,2,3,4,5 but when it starts growing its own in the liver it can and might change to 3,1,2,4, 5.  It can even add or take away. The oncologist said they had found this happening in Pca.  The biopsy Steve is going to have will be tested to see how the cancer has changed from his pca and hopefully it will tell us how to treat.  Our oncologist said the man who found the way to test these changes is probably going to get a nobel prize for his work.

Made me think his Pca has been growing and spreading for years Cancer is so smart it figures out how to keep growing in new areas and changes so the meds to do not kill it anymore.   

From what I am reading it is Pca in the liver mets but as testing is continuing they are giving new found ca cell new names. These cancer cells need different treatments and they can combine several medications to fight them. They have idenified small cell cancer cells in liver mets, if it is new or pca changed I do not know.

Dr said he wanted the biopsy in one week and today they called and told me it is not scheduled yet, it has been one week today.  Carol

Posted 8/4/2015 10:12 PM (GMT 0)
Antonia - so glad to see that Don is eating something! The diarrhea aspect complicates what you can give him, for sure, but with some modification I'm sure you'll hit on the right thing. Finally, good news on a palliative Doctor! Oh my, that has been such a struggle for you both - this should ease your mind knowing there is someone who cares and you can talk to. Wonderful!
Lisa - Going to print out that smoothie info as I know Don will be needing it. His taste changes after chemo and it's harder to get him to eat. Thanks for that!
Carol - appreciate the info on the small cell liver cancer. Don's doctor mentioned that right after the last CT when he immediately changed from Jevtana back to docetaxel with the carboplatin combination. A new CT will be done in 3 weeks. I'll read up more on this and what a liver biopsy entails. Appreciate the info and thank you.

Susan
Posted 8/4/2015 10:24 PM (GMT 0)
You know, Susan and Lisa and Carol, I am reading your posts with amazement. Here, no one would give a **** whether it's in the liver or the big toe. No one has suggested any more scans. The oncologist literally gave all the files over to Dr. G. Reaper and the "I am going to help you to die" conversation began. It's the cachexia I guess. Once you have that, it's game over in their eyes.
Posted 8/4/2015 10:39 PM (GMT 0)
Antonia, I am amazed in a country that we are told has medical care for all, the struggle for basic care has to be begged for! It's disgusting! Had I not seen the struggle you have to go through I would never have known that. That is never far from my mind when I know what is available here. And I so wish you & Sue had the same for Don & Dave. It's not right that you don't.
Posted 8/5/2015 7:31 PM (GMT 0)
Hello Everyone;
I read back on all our posts and I see such a familiar trend for all us. Husbands who are all ill , us wives doing EVERYTHING and it ALL. Not enough attention from anyone that could help and we are frantically waiting for some one any one to throw us a live jacket so we can save our guys. Its not happening....Why? Today when Dave and I talked I said from the start your cancer has been so very miss managed .I listed off with my knowledge how it should have been treated. BUT he said something kind of genius I the past 2 years they the oncologists and Drs haven't know how to do it any diffrent. Standard of care is always the core topic at our oncologist appointments. Going by what each of us have posted our men don't have ordinary PC.I know for a fact from a article in a oncology news format I get in my email that the hormonal drugs will never work for Dave .He should have been given chemo in August of 2013 and it should not have been standard docetaxel it should have probably been jevtana. The xtandi wasted almost 2 months and when someone is that ill on meds after a week why make them keep on keeping with it. I know they aren't offering to treat his liver mets and will ask the question of why not.? Have a great day 💙 XOXO
Posted 8/5/2015 11:41 PM (GMT 0)
So...so...FRUSTRATING.

We really don't have answers yet. Period.

One person might want the honest truth and the other might want to be in the dark. This is compounded by the fact that we know the truth...sort of...+/- YEARS!!!

Mel
Posted 8/6/2015 12:04 AM (GMT 0)
Here above the 49th, cancer drugs are dispensed as "standard of care" as if they are lined up like bows in a quiver. #1 bicalutamide and a GnRH receptor agonist or antagonist. #2 stop bicalutamide. #3 Try nilutamide. #4 try abiraterone or enzalutamide. # 4 try enzalutamide or abiraterone. #4 docetaxel #5 cabazitaxel #6 Give up entirely and pass patient over to palliative care. Subtle variations may be tried by the very adventurous, including CHAARTED recommendations. No one appears to give two hoots about mutations or different types/velocities. If you mention these, the majority of oncologists will look vague and fall back on the "standard of care" mantra.
Posted 8/6/2015 12:49 PM (GMT 0)
Moonlit:

Except for a few top doctors here, I bet the situation is similar.

I suspect by the time you get to the 5th drug, the sequence might vary slightly.

Mel
Posted 8/6/2015 1:30 PM (GMT 0)
I found Dr. Myers to be different, Mel, and wanting to combine drugs. The only problem was, we couldn't get access to those drugs up here as no one was willing to prescribe off-label. There is also the "old boys" club with favoured patients who belong to the same tennis club and what-not. We have seen this one in action with a very well-known urologist up here. I dare say this happens the world over. But it shouldn't.
Posted 8/6/2015 2:38 PM (GMT 0)
Moon:

As I said,..."except for a few top doctors..."

Mel
✚ New Topic locked
12345678910