"Sue Saddened Wife" Continuation Thread

There was so much information but let me tell you some.  Because of his liver function so low his blood counts are effected.  His ferritin is very high but iron level is low in the blood. The bone cancer/ bone marrow has stopped some production of blood so all blood counts are low, which makes him dizzy, weak , sob and tired.  They said the bone cancer is high in some bones and they have so much osteoblast that it has effected his calcium and potassium and billrubin. It was amazing how cancer being in one place can effect something else in the body, such as liver cancer can lower potssium which hurts heart.  Liver can elavate billrubin which can effects digestive system. Bone cancer will lower calcium which can make bones weak. I read so much about all of this but did not know what to do to make him feel better and now I know and am going to read much more. they gave him suppliments to help with immune system/ blood cell counts/ bone marrow function/ nausea/ fatigue/ bad taste in mouth. One even gave me a rescipe for bone marrow soup. She said it has no taste and adding it to anything liquid will help him. I am going to contact some one in my town to continue with the help.  My cancer center never even offers suppliments/ nutrition info or even finicial assistant if needed. I have learned to be aggressive and I am going to call in an army to give me all I need to help Steve through this better. Be strong - Carol

Hi Carol and Steve,
I have been watching for a new post from you. Steve and Gary are very similar in everything, including their love of riding their bikes. Gary's PSA is still around 900, but slowly dropping after starting a rerun of taxotere. Has Steve considered looking into retrying a tx? How is he feeling? Gary is really hanging tough. Hope things get better for you with the new medonc involved. Best wishes.
Beth n Gary

Carol that is so good your husband can do that bike trip. Its probably a long ride for someone well so just the exta effort needed when you are not well. We have a corvette that Dave has not yet driven this year ...I am hopeful he can go fpr for a ride. Its very low to the ground and I know it won't be easy to get in and out of. Boys and their toys,! But I wouldn't have it any other way . It gives them a boost just to have dreams and things to look forward to.
Dave at least has been talking about next summer , things in the winter so I am happy he is focusing ahead instead of at that crap 2-4 month prognosis.
Antonia hope you and Don are surviving that ridiculous heat! My good freind and neighbor was out in Campbell River last week and she said ...holly Hot, They are moving there the end of the month, bought a house while there and very excited, ! So one day I may be out that way and would enjoy meeting you. You never know . Dave also has a lot of relatives out that way as well, Years ago you could travel from one side of Canada and never need a hotel because of family. Now I think you wouldn't be as lucky as we have all shifted to different areas.
Susan hoping all is going well there. I hope you get some good times spent in the warm weather. Dave is doing well on zytiga and I am hoping its working for him. When I posted his increase in psa his points had moved way higher in just 11 days .Well sunny warm and plants that need water . Have a great day everyone
love and hugs Sue💙 XOXO

Morning all!
It makes me so angry when drs write the men off and decide they are done with tx when our guys are still feeling good and looking to keep going. We have been fortunate to have a medonc that won't give up until Gary does and so far insurance has been approving too.
Carol, Gary can relate to Steve's run. He had a similar experience at last year's Redwood Run!
Beth

Same here Sue! No one gives a toot about haemoglobin and platelets, except maybe for the palliative guy whose goal it is to start some sort of hospice program. Maybe I am not giving him a chance. He did refer to the system as being BS and that he would be Don's quarterback. But the oncologist truly didn't give a darn and now is away for a month.

So glad you are feeling better Krissy...but statistics class. YUK! I recall taking that some years ago and it was nasty. Thank heavens for the kayaks! They will be a lot of fun.

Don was really ill when his haemoglobin dropped to 69, platelets and leukocytes as well. Three days ago he had three units of blood and can now walk a few more steps...a block or two actually, without tiring. He has really bad cachexia and we are trying to figure out what to do about this. In theory and certainly practice with a few humans, the 3BP has caused a significant drop in LDH, which is a good sign. He begins this treatment Friday.

So his blood numbers have improved after the transfusion: WCC 2.8 to 3.9, Hb from 69 to 94 and platelets 105 to 131. Still low but greatly improved. I don't know if the counts continue to rise, or whether one usually needs more transfusions to get the blood profile up to where it should be.

That's our update :)

Dr. Strum (prostate oncologist for over 30 years) says that Ra 223 is not a good drug in his opinion and can do a lot of damage for a mere 3 months survival benefit. He also said a patient of his was doing very well until his oncologist (a second oncologist?) suggested Ra 223. The patient then died.

Don is having weekly blood work. I'd like it bi-weekly so that we can better assess if the 3BP is working.

Oh dear. How incredibly ignorant. He obviously does not understand that IVC is a PRO oxidant and not an antioxidant like oral vit C and OJ. Carol, we are using something with considerable promise but no guarantees. The history is quite remarkable. A few of us have just started but I'm not saying any more as this forum is less open regarding non evidence-based treatments. This one has just been developed in a different delivery method by Johns Hopkins and Mayo is also apparently onto it. But then there must be trials and we have not got the luxury of waiting another 10 - 15 years.
I am so, so sorry and hear your frustration loud and clear. Sending you a huge hug. Email me if you wish.

Post Edited (Moonlitnight) : 7/7/2015 11:59:20 AM (GMT-6)

Hello all, Been quite busy around here once we got past the first week with the nephrostomy the SEs from the chemo & family stuff.
Carol - I am pretty concerned that your doc is so down on the Carboplatin - my Don's last CT showed the Jevtana was not working (multiple new liver lesions and PSA doubled) so he was switched back to Taxotare & Carboplatin was added. He will have his second treatment this Friday. Does your doc cite any research that backs his statements? Oh Geeze. :( Does Steve intend to take part in the trial? I sincerely hope there's something for him out there that gives him life.

Krissy - Great news on your classes now all you need is for the sleep you do manage to get to be deep & renewing - you know, if it has to be less, let it be more. Or something like that.
We had kayaks at one time and loved the freedom of so easily slipping through the water - its peaceful.
Hopefully Paul will be able to get his dental work done soon and he'll feel better.

Antonia - Wish I could send some cool air your way but there is none to be found here. I am watching your reports on your Don's treatments - it does look like he's gaining some ground. I do wish my Don would be more open to trying something out of the medical norm. After all, look at the damage these treatments do to their bodies and minds. I just don't know.

Sue - I think you should be a scheduler! I don't know how you keep up with all of the arrangements you have to make every week. Maybe you should be going to school with Krissy. If you could make the appointments Dave needs without that useless doctor things would run much smoother.

To all the women on this site: Lets carry on and do the best we can.

Get some wacky tabacky for the cachexia? I have heard that works. Is it legal there?

A weird story..... Kind of a real life Breaking Bad.... (have never seen this myself). A friend of mine's dad.... was a union foreman his whole life- hard worker, helped raise the grandkids who are all doing great things now. Much of his career was a speciality traveling the country building prisons of all types..... Diagnosed with cancer and mets to brain recently...... Treatment going just okay.... I was reading headlines back home one day.... He was arrested with $100 grand and 20 lbs of pot.... I still can't believe it...

Kinda wish I knew back when Paul was losing so much weight I would have begged him for some if he were closer! And yes, I felt that desperate to do anything that would help him I would have risked my nursing license to help him, or at least thought about it an awful lot that's for sure. I hate that desperation feeling.....

There are websites that have recipes to make high calorie/high protein shakes... Paul liked them but I haven't made them as his weight has been fairly stable save for that weird drop not too long ago. Take ice cream, add powdered drink mix- carnation, boost powder, and boost as well as chocolate or whatever syrup. You can get a ton of calories in a cup not to mention vitamins and minerals. Gatorade makes some really good protein shakes now that be enjoyed alone or used in place of milk above. Also there are these protein shots that you can get... Bodybuilders use them. Talk to someone at the local gym that has serious bodybuilders and lifters. LOTS of drinks they have may help and way cheaper than anything labeled for medical use.

I remember when Paul was dropping so fast, and I was so scared I was looking for anything. And yes, I did hint around about even buying pot.... All my co workers are way too square to have a connection and I just don't know a soul down here really. At least back home in NH its now legal for medical. I doubt GA will catch up anytime soon. So we did without the weed....

I have some Boost powders and Carnation drink mix I can send you if you want to try? Its just sitting here- Paul drinks straight up milk now- maybe 2-3 gal a week easy.

Krissy, got the wacky tobacky but as an oil and he's used it for over 14 months. Here, you can get a script for it. Not much seems to work for my husband. The trouble with high calorie shakes is that, with cachexia, you can stuff yourself silly but you don't put on any weight. Plus all that sugar and fat is bad for the heart. Whey isolate is the studied protein supplement shown to arrest cachexia so he has this every day. Thanks so much for offering to send, Krissy, that is just so kind, but we only eat "clean" with absolutely nothing artificial. Neither of us does dairy either. Don because with Ca it is not a good idea due to inflammatory factors, and me because I am vegan. I make up his high calorie shakes with organic almond butter, water or no-sugar added rice milk, kale leaves, a nub of ginger, lemon peel (all organic), green tea, chaga powder, broccoli sprouts, ground bitter apricot seeds, Vega vegan protein, whey isolate, wheat grass powder, chlorella, and a few frozen berries. He has this after a slice of toast and almond butter in the morning. Lunch is usually a giant sandwich over at Faubourg - which I heartily disapprove of because the chicken isn't organic. He has some sort of healthy snack in the afternoon, or another protein drink and then gets a huge revulsion to dinner. Sometimes he will eat it - if we go our for fish tacos maybe. His caloric intake is way too low. Very nutritious but too low and he refuses to eat more than this. We have had a few set-to's but I know he can't help it.

So is your friend's dad dealing? I never watched Breaking Bad and have no clue what it is about.

Beth ENJOY your summer! I am with envy! I can't even get a weekend to myself.

Hi ladies,

Just wanted to add my good wishes directly in here. I find this thread horribly difficult to read because we will be there - just don't know when.

Take time for yourself to just sit and breathe for a minute even when life is just one difficult thing after another. You are all fighting for what's best for your husbands and I hope I will be able to do as well.

Carolyn

Ok bloodwork came back hemo at 92! So nurse said transfusion will probably not go forward. But not that I want her job but Dave is so symtomatic why not?Then her reccomendation to spend 6 hours sitting in a emerg for WHAT? Not going to happen no he does not have a blood clot he is on fragmin , please read chart! Will be so happy next Wed to have a hemotologist on board with us. The hemoglobin at 92 is still low and absolutely no reason to make that get to danger area. I hope the transfusion is a go for Fri because if not then it will be next week any way. So sometimes I want to just quit Cancer ! Fri is palliative care and we both don't care for anything about that. It really is like looking at your mortality through a double loaded shot gun YUCK.... other than getting prescriptions I so no point for going there. Dave always says no good ever comes out of going to the cancer centre and he is right Well time to think of what we are having for supper. .hope everyone is having a good day 💙💙