Help – Any suggestions?
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- This topic has 21 replies, 12 voices, and was last updated 8 years, 10 months ago by iowagirl.
May 2, 2014 at 3:04 am #82076darlaSpectator
I’m sorry I don’t have any answers for you either and am so sorry for everything you two are going through. If caring thoughts, love & support can make a difference you and Mark have a whole lot of that coming your way. Thinking of you and Mark and hoping that things start getting better. soon.
Lots of love & hugs,
DarlaMay 2, 2014 at 1:36 am #82075iowagirlMember
Kris, I have no experience with this…but am sending you a huge hug. Even with your training…or maybe even more so because of it making you more aware, I know you must be so worried. I can “hear” in the words you’ve written about your husband and the saga of his illness, that he means the world to you.
Hugs…and more hugs,
Julie t.May 2, 2014 at 1:25 am #82074marionsModerator
Kris……I wish I had an answer. Two weeks post treatment is not very long. His caloric intake is rather low as well; perhaps Mark is simply wiped out from the treatments.
MarionMay 1, 2014 at 8:29 pm #82073lisasSpectator
Damn Kris, I wish I had some great words of wisdom for you. My appetite is still really poor too and my taste is off and my oncologist said it would take a few weeks. And, I’ve had more nausea since finishing chemo and radiation than I did when I was doing the chemo and radiation, which I find strange. It drives my husband crazy – he thinks I should just force myself to eat regardless of whether I’m going to throw it up or can’t stand the smell of it and I just can’t do it.
Yesterday, when I went in for my biliary tube exchange, they weighed me in front of him. 111.3. Fully dressed. Boy, did I get an earful about that.
So, I can relate in part, but I think Mark is having a much harder time with it all than me and I hate that for you both. Did he get a feeding tube? I seem to recall some discussion of that recently. Maybe this is the time to put it to use or talk to his oncologist about it to get him over this hump?
I’d be all over that medical marijuana to boost his appetite. I was really never a pot smoker in college, but I think I wouldn’t have any qualms about it as a patient. Unfortunately, it’s not legal in Texas, but I’ve had friends offer to get me some. Why doesn’t he want to try that? He’s lucky he lives somewhere he can get it.
My only experiences with super low BP were when I was getting septic from a bile drain tube infection that got into my blood stream. But, if his numbers look okay and they’ve ruled out infection, I don’t know what to tell ya.
Sending you both a virtual hug.May 1, 2014 at 8:20 pm #82072jscottMember
Andrea did not really start getting much better until about 3-4 weeks after the last IMRT radiation dose. Even then, the improvement was very gradual over the couse of another 3 weeks.
Her main symptoms were an inability to eat / drink and fatigue. She was able to drink a little room temperature liquid and maybe could hold down 400 cal a day.
Andrea never had anything like confusion, so I don’t know if the situations are comparable. I remember being very worried that she was not getting better and it was 2+ weeks after radiation. In her case, she did start gradually getting better around that time.
Hopefully Mark will start improving as well.
EDIT – I would not say she got worse after radiation ended, she just didn’t get any better. If Mark is getting worse, that is different from Andrea’s experience.
JasonMay 1, 2014 at 8:16 pm #82071lainySpectator
Kris, I don’t know what to say so just talking here from what I may be thinking. No, I don’t you are too close to the situation, Mark is your husband and you are reacting just as you should. Could it be a delayed reaction from the radiation/Chemo? The mystery is that his LABS are good so what the heck?
It is so strange that he seems to be slipping yet there is no evidence why? When was his last scan and it was good, yes? OK. how about this as I would do this for Teddy. Now I am not jumping ahead but it may be helpful to you both if the ONC called in Hospice until they can get him going again. You humanly cannot keep up like this. You know they can come for awhile and leave when you feel its ok. I would be worried too but to keep your sanity you cannot keep the pace you are keeping. What do I know? I don’t, just use my gut feelings! Thinking of you both!May 1, 2014 at 7:47 pm #9910kvollandSpectator
Okay, I am so ready to pull my hair out right now. We are now over two weeks past the last radiation and the 5Fu chemo stopped. Mark just keeps slipping down hill and I am not sure what else to do.
I know I am too close to it….it’s hard for me to step back and take a clinical view like I would with my patients.
His weight is now down to 175# (he was 215-220# when we started). He only drinks maybe 8-10 ounces of fluid a day and only eats about 1/2 a can of soup, a Carnation Instant Breakfast and maybe some MaltOMeal a day.
Currently he is getting 1 liter of fluid three times a week that I am doing at home rather than driving to Seattle for it. We started Megace last week and started Lexapro (an anti-depressant) two days ago. I stopped all his blood pressure medications last week and even today his blood pressure was 74/56.
I ended up dropping everything at work and running home because when I called to talk to him he was slurring his words and not making sense (I worried about a stroke but he was finally neurologically when I got home). But he sleeps all the time and even when he is awake he really doesn’t have a clue what’s going on. Yesterday the Infusion company called him to see what he needed for supplies and he didn’t remember them calling.
I have been in close contact with the MD office and I will give him extra fluids today to help with the low blood pressure. His lab work is fine…liver, kidneys, all that. In fact white count, red count and platelets are all back to normal after chemo. I have the script for Medical Marijuana but he flat refuses to use it or even consider it. I also started him on Super Digestive Enzymes which is an over the counter supplement that has probiotics and enzymes to help with digestion but that hasn’t made any difference.
Any suggestions or thoughts? Maybe someone has a idea that might help.
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