Topic: Help - Any suggestions?

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.

Thanks, KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Help - Any suggestions?

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by JScott Thu, 01 May 2014 14:23:23)

Re: Help - Any suggestions?

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.

Jason

4 (edited by LisaS Thu, 01 May 2014 14:32:06)

Re: Help - Any suggestions?

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.

Impatient patient.

Re: Help - Any suggestions?

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. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Help - Any suggestions?

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,

Iowa Girl
Julie t.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Help - Any suggestions?

Kris,

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,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Help - Any suggestions?

Kris,

I'm so sorry. My husband so appreciated a warm wash cloth on his forehead and bites of cold lemon-flavored sorbet when he was feeling so bad.

If you can get extra hands for help, such as hospice, then you can spend more time being close with Mark.

From what I've read, sometimes our loved ones' statements that make them sound like they are confused, may instead be symbolic/coded messages about their wishes at this point in their life.

Remember that we are all sending our love and thoughts and prayers for you and Mark -- a sweet, loving couple! So glad you have each other.~
Big hug,
Margaret

Re: Help - Any suggestions?

Oh Kris I am so sorry you both are having to go through this difficult time.  I don't have experience on this and can't say much but I do hope he feels better soon.  As you know I live in Oregon and we have the medical marijuana as well.  I must say for me it has helped specifically with appetite and sleep. Hugs and blessings to you both.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Help - Any suggestions?

Kris,

Sorry to hear of this and I too have no experience personally of the treatment that Mark has had, my dad never went through that so I can't really add anything here about that. The medical marijuana would probably help get Mark's appetite up but as you say he won't even consider that, why not? I too do not think you are too close to things either, just wanted to say that as well.

I wish that there was something else that I could suggest here that would help Mark but please know I am thinking of you both and sending tons of positive thoughts as well.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Help - Any suggestions?

Thank you everyone for your thoughts. Lisa and Jason thanks for sharing your thoughts and story. I think he may be a "little" better today since I got him to eat more. I talked to ONC yesterday and he says all we can do is wait. That some people get beat down more than others so it takes longer. He also said this was one of the roughest things he does to his patients.
I don't think we are ready for Hospice since we supposedly beat this cancer....hate to think that the cure really was worse that the disease. We have talked about Home Health for physical therapy but he's a stubborn man.
As for the medical marijuana....he still sees it as an 'illegal drug' and says that he's gone 50 years without using and he's not going to start now. I think it's more on principle now rather than any real reason. I am not going to push it for now.
We talked about J-tube but they don't want to put him through another procedure so if anything it would be TPN but again the labs look good so no need right now.
I guess I just need to be patient....not something I known for smile

Thanks again,
KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Help - Any suggestions?

Hi, Kris.

Physical Therapy helped my brother so much after radiation and chemo.  He lost so much muscle mass and energy during chemo.  But since he started PT, he's been getting out and about and is feeling so much better.

Sending positive thoughts your way!

Sis

Re: Help - Any suggestions?

Well after the weekend things still aren't much better. Weight is down to 170# now. He's still vomiting periodically which bothers even the doc, he said he shouldn't be. Mark finally is able to tell me why, not so much nausea but the feeling something is caught in his throat causes him to feel liking he is choking. I asked the doc about maybe an upper endoscopy (camera down his throat). He is considering it but wants to see labs first.

So I drew labs this afternoon and we will see what they look like and go from there.  I think he is just a little too content in taking fluids IV so I am going to have to work around that.

I did tell him he needed to take the dog for a walk everyday....even if its down the driveway and back which he did do today so that was good.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Help - Any suggestions?

KrisV
I'm so sorry to hear about Marks problems. I don't have much to add except they did warn me I might have reactions to the radiation as long as 6 weeks out.
I didn't have any serious reactions, but they warned me that I might develop problems.
I hope Mark starts improving. Hopefully the walking helps.
Other than that, all I can say is I'm sending positive thoughts and prayers for healing.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Help - Any suggestions?

Today went a hair bit better. Labs came back and they all look pretty good except his liver enzymes are up a bit....bilirubin is up to 0.9 which is still normal but now the new highest since surgery. The rest were just a hair above normal. I have seen them worse.

I did get him to go on a walk today. Not very far down the road but it was a walk. He tolerated it pretty good so that is a plus. Hopefully I can get him to it more.

Also a little miffed that the doc's office never called me back this afternoon. It was the third nurse in as many days. And again I had to tell her the whole blood story again?! Then they hadn't got the labs, then she gave me the wrong phone number and now no call back. I am fuming just a little. Deep breath....this too shall pass.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Help - Any suggestions?

Kris.....improvement can come in baby steps.  I think that Mark is on his way to better days. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Help - Any suggestions?

Kris...boy do I hear and understand your frustration.  Hope that Marian is right....improvement in baby steps.  I'm right with you on the lack of the doctor calling personally....and having to re-explain to nurses the problem over and over.  It's one of my biggest frustrations with medical care.  You'd think when you get one of the "big ones", that they could cut some slack and give some more personalized care.....as if we don't have enough to deal with, living as patients and caregivers with this crap disease. 

Hugs from Iowa Girl
Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Help - Any suggestions?

Okay well I am going to call it good news. The last three days have been pretty good. He's been up moving around and doing some things around the house (including tinkering with the clothes dryer which died....ended up buying a new one) and he are three meals today. One was only a Carnation Instant Breakfast but still three meals. And tonight he had a real meal of shrimp stir-fry. I thought it might be too much both how much and what it was but he ate it all.
I really feel like we are turning the corner. He is still sleeping quite a bit but not as much but I don't care about that. He also went over to his mom's with me and we checked out her mini-donkeys. I suspect we may have a baby one soon and even got just a tiny bit sunburned.

WooHoo! Thanks all for your positive thoughts and prayers. It obviously worked.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Help - Any suggestions?

Kris I am so happy to see and hear that Mark is starting to feel better and had a good day. wink

Hope, love, strength...2013 and for the years to come, Porter.

Re: Help - Any suggestions?

Kris,  Glad to hear Mark is showing some improvement.  Keep the good news coming.  smile

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Help - Any suggestions?

That's great news Kris, thanks for sharing that! Hoping that Mark continues to feel a lot better with lots of improvement!

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Help - Any suggestions?

Kris...I can "feel" the relief in your words.  I'm so glad.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.