My husband Michael

Hi everyone - I posted this  yesterday, however, it did not appear in this spot, so here goes again.

"Hello to all - while I have not posted in a while, I read this site daily and cannot thank you enough for your strength, your endurance and your wisdom.  My husband Michael was diagnosed late January '09 with SCC Stage III.  On February 6, we found out that it had metastasized to his liver.  Staging changed to 4C.  It's been quite a roller-coaster of emotions.  He finished the dreadful chemo cocktail with good results and is near to the end of 30 rad treatments.  He worked until last Friday.

He has a peg and only just started using it.  He's losing weight daily because for the past few days he vomits every little bit that he injests.  Thought it was from the percoset - he was taking them every 2 hrs in the evening.  He was also put on the fentanyl patch up to 75 mgs -  and he thought the patch was causing nausea.  Now he's on liquid methodyne and still not holding much down.  Someone on this board recommended a hospital grade feeding pump and tonight will be the first night of 12 continuous hours of feeding.- hopefully w/good results.  The oncologist said that it could be from radiating near his brain that controls nausea."

Today, July 2, we went back today to see the pain doctor, he got another rad treatment, and it's been one frustrating day.  He's still vomitting; we had a visiting nurse come last night and she didn't know how to operate the pump - finally we figured it out.  This morning another nurse came, was here for over 2 hours, did not know how to work the pump and then we lost power.  Michael melted down at Sloan when he saw they had him scheduled for an additional rad treatment and he's just had it.  He's still vomitting and now the concensus is that it could be because he's not had a bm in days.  The tech was supposed to come over to reprogram the monitor on the feeding pump and he didn't show either.

I apologize for going on and on.  I sometimes feel that I'm at my wits end and then I look at Michael and I feel just awful.  I know he's endured and endured and I become patient again.  And I'm doing things that I never thought I could do - even tho I gave birth to two children.  I'm becoming very adept at nursing.

So that's it for me.  I continue to keep all of you in my prayers and would ask that you do so for us.  God bless each and every one of you.

Georgette

Georgette,

Have they tested him for dehydration?  Sure sounds like that could be part of the cause if not all of it as to why he is vomiting - electrolights out of whack.  My husband got like that near the end of his treatment.  After three days of vomiting I insisted they put in the hospital.  He was there for three days and could keep food down when we left - I understood it was all related to dehydration.

What kind of a pump you have?

They gave me a Kangaroo 324. It was rather easy to use I just set it at 60ml per hour and filled the bag thats it.

The thing he and you have to keep in mind is it gets better.

The darkest hour is just before daylight

Bob

i did my own IV's they just left the needle thing in my port and gave me supplies and lesson on flushing it and we changed it every week. I dont read about anybody else doing it. It kind of sucked having that needle thing in my port but pouring those IV's in me felt good week 6 and 7 of radiation and the 2 weeks after.

Thanks everyone for getting back to me.  Figured out the pump (Kangaroo) and I suppose that because the nurses were clueless, I therefore second gueesed myself and did not think I could get it going.  We got it going - with Michael directing. He's not dehydrated - yet.  He was flushed by iv this past Monday or Tuesday and every day since he's been seen by the medical oncologist.  He may just wind up in the hospital and I'd hate to see that happen.  I'm afraid he could get even sicker - there are so many germs, etc.  (I saw my mom in and out of hospitals and have since changed many of my views.)  He still has not moved his bowels, which I'm told could be the culprit.  So far he's had a bottle of magnesium citrate, via feeding tube, followed by flush of water; I've also squashed Senna and mixed with water via pump, and still no bm.  Last night after getting down at least two cans of feed via food pump, he vomitted it all up.  I also have a humidifier going in our bedroom; that seems to help with the mucus. 

So much of this mirrors my mom's cancer - she also had SCC.  And she was vomitting non-stop - we thought from the Percoset - and she also wound up in the hospital because she was impacted.  Fortunately with the holiday, he has 3 days off of radiation and then back on Monday for two more.  I look at him and he's so thin, his pupils are pinned from the drugs and the smell from his mouth is awful.  I don't believe he's aware of any of these things, and in my darkest moments, which I don't allow to surface too often, I wonder where he has gone and if he'll ever come back.

Today is another day, at least we don't have to drive to Sloan, and maybe it will be quiet.  Our dogs have been amazing . . . have kids and grandkides, whom I love, yet Sable and Diesel quietly stay present.

God bless everyone and I pray that health and healing will find its way to all.

Georgette

Hello.  I am 10 months out of radiation treatment for stage three tonsill cancer.  I was very lucky and did not suffer nearly as much as what you are experiencing.  My wife and cancer team were very knowledgable and supportive of me throughout.  But I just wanted to say I teared up when I read your story and my heart goes out to you in a big way.  I know what we endured, I cannot fathom what it is you are experiencing.  Please hang in there because eventually things will get better  .I will be thinking of you.

Don't know if it's appropriate pain med for your sweet husband Michael but my brother has just  started Actiq. Oral Transmucosal Fentanyl Citrate. 400mcg.  They are lollipops that he can suck on every 2-4 hrs.  They have been wonderful for pain and have given him a sense of well being.  Those are his words.

You're in my prayers. 

Rebecca

Georgette,  i;m sure you'll get lots of advice for your husband but here is mine. My husband had stage 4n2c of the neck and went through alot of the same things your husband is going through, we started at a weight of 205 with a peg tube in place (i still believe it saved his life in the end) and he due to the vomiting he was down to 140. Their is a over the counter lax called miralax, it is tastless and powder so it can go in anything. Also we were prescribed comazine and reglan prescription for nuasea. I think that a combination of all of these meds everyday and i was told that bowel movement is very important to keep him from getting to sick to continue treatment. My husband was on 250mg of the patch and 10mg of morphine so one the days he had chemo we would also use zofran (is for extreme nuasea) for 5 to 7 days after. That is a miracle nuasea medicine but very expensive $250. for one pill. We would use all that insurance would cover and buy what we could then use the meds mentioned above. I personal believe that if you could (fix) the nuasea and pain with good palpatative care, then your husband can handle the treatment. My husband was at a cancer treatment center and  so i had someone there to answer my constant questions. Good luck and god bless , lynn

Good advice here so far.

I had huge problems with nausea and feeding through my tube. I also found out that the pain meds can make you constipated. I was using sennacot, a natural laxative, and finally resorted to suppositories a couple of times. It sure wasnt fun.

Hydration is very important, it helps with the nausea and energy levels as well as constipation. Try some Gatorade.

Best wishes,

Mike

This just sounds like more than anybody should have to go through. I'm so sorry you're having to deal with this. I'm surprised nobody has used suppositories on Michael. During my treatment, especially right after getting the PEG while my body was adjusting to the new feeding system, I was badly constipated a lot, and the only thing that helped was daily miralax and suppositories, and even then it was tough going. It seems to me that this needs to be addressed big time because it could be affecting everything else that is going on with him, and he needs to stay hydrated and fed if he is to be able to withstand continued treatment. I truly hope this is all resolved by now - I know I'm responding a long time after your initial post - but if not, I want to support you to really be aggressive with your treatment team about how to get this better. Blessings to you.