need an oncology nrs to help me c my husband

leslie :-D · Sep 1, 2004

oh sherri,

i am so sorry this is happening with your husband and you.

obviously you have many unanswered concerns.

my question is, if it is palliative care, are all of these aggressive treatments truly going to bring him comfort?

and how much extra time are they talking?

if it's a matter of a few months, will all these treatments impact the quality of his life?

i would sit down with the oncologist with your list of questions;

and i say this mostly gently, that you might even want to ask about hospice services, where your husband will be made very comfortable.

you and he have some hard choices to make but neither of you can possibly make them without being informed of everything that is happening; especially in terms of prognosis.

again, my heartfelt condolences....

leslie xoxo

Trauma Columnist · Sep 1, 2004

Sheri -I am so very sorry you are having to deal with all of this. Your husband is so very lucky to have you. Like Leslie (above poster) said though I would sit down with oncologist and get a more definite prognosis if at all possible. Is hospice an option? They often have volunteers that will come and visit and just sit and do nothing. Hospice is focused on quality of life for whatever time is left - my personal experience with them was so very wonderful. I truly will keep you in my prayers - you have a lot on your plate.

jemb · Sep 1, 2004

So sorry about your husband, Sherri.

5FU- Leucovorin-Irinotecan combo can cause diarrhea, n/v, and very painful mouth sores. If your husband is not able to get up and do self care, I'd be very concerned about leaving him alone after chemo. He also could become neutropenic from the treatment.

I have seen a few people improve dramatically from this particular regimen, but they were not as ill to begin with as your husband seems to be.

I, too, suggest a conversation with the oncologist. She needs to tell you exactly what results she expects. If the tumor shrinks while he is on chemo, then begins to grow again after he is off treatmnent, you may extend his life by a few months, but many of those months will have been spent suffering the s/e of the chemo itself.

If the treatment is palliative, he should be able to be treated even if he is on hospice care. That way his other needs - especially his pain- could be addressed also.

FranEMTnurse, CNA, LPN, EMT-I · Sep 2, 2004

excessive sweating, (shirt, chair completely wet) is on prednizone 20mg q day Sherri

Sherri, I had that kind of sweating when I was on Prednisone. I was sooo wet the nurses had to do a complete linen change, including my gown at least once a day, and sometimes even more often than that. Another side effect was heat. My daughter had the thermostat turned down to 50 degrees, and when I woke up. there she was, all wrapped up in a blanket, watching my breathing pattern. This is a girl who loves the cold. I am sooo very sorry about your hubby. You certainlly have your plate full.

((((((HUGS)))):kiss

Shotzie · Sep 6, 2004

Sherri,

Just wanted to check on you. Please know that we are praying for you and your family. Is there any way you can get any kind of help to give you a little relief?

I wish you peace for the rest of this year. keep us informed on how you and your husband are doing. We really want to know

thatldo · Sep 7, 2004

Thanks everyone for your kind, uplifting words of support!

Sorry it's taken me awhile to reply and to thank you all for your advice/concern.

Roy had his 1st chemo tx last fri, he was so weak before the tx the nrs asked if he was paralized. I said no, he is this way all the time.

Geez the conflicting information you get....the Dr said tx time was 2hours, nrs informed me it was 6hours!

They gave him an ativan which knocked him out. I stayed c him, it was a new experience for us both, the nrs we had was great, and told me the reason hospice probably hadn't been mentioned to us yet by the dr is that people will give up any hope.

Our family has all given us $ to help c expenses, (work has been great in letting me have time off, but no pay) so I was able to buy the morphine dose 30mg bid.

His hip is hurting him, and still has tightness in stomach, appetite nil, still not up to par, vomited x2, more weakness, mild HA, dry mouth are SE so far.

I did end up getting a hosp bed for him to keep him off his stage 2 pressure sore. He still sounds like a 90yr old when he talks, very very weak voice. Thought maybe that would be related to they thryoid tumor, but doc said no.

I'm going to talk to my son who is 2hours away at college, and try to see if he'll come home to help. He missed this semester, due to lack of funds to enroll by due date, so maybe I can convince him to come home, work and help out.

As mentioned work has been great, other nrs are cooking meals for us, and offered to stay c Roy if need be while I'm at work and if they are off.

They are a great crew, & feel blessed to be where I'm at.

Looking back, I can't help but feel GOD's hand in all this.

In my husbands time of need, I'm close to home, my boss/coworkers are great about the situation, and that sure helps c my stress level.

Oh, the endocronoligist said the tumor in thyroid is not related to liver ca & to start/continue c chemo tx, and in 5wks when ultrasound is done again to check liver, to check the thyroid also and then will progress from there.

I'm so thankful/grateful to you all for your concern. I've been on this board for a little over 2years now, and it has helped me so much.

It really does help me to know you all are out there and have such kind hearts.. No wonder you all are nurses!!!!

leslie :-D · Sep 7, 2004

i wish you faith and love in this trying journey between you and roy.

do not hesitate to speak with us anytime, for any reason.

leslie xo

thatldo · Sep 13, 2004

Hello all,

Was driving Roy to chemo tx last Fri, when he started complaining of being cold, shivering, and pulse rate 140. Was yawning like a horse..was all I needed to pull off highway real quick and pulled up to where I work. (nursing home wich acute care). Ran in the building and told my DON my husband is out in the truck & he needs help.

Roy's pox was 74, put him on O2 at 7L/M & called an ambulance.

They kept him just overnight, stabilized him, gave him fluids, and cleaned him out for fecal impaction. (Chemo DR had 2 weeks earlier to take him off his stool softener program because I guess they were expecting SE of diarrhea).

He has long hx of severe constipation... serum amonia level was up, was supposed to compare it again the next day, (but never drew another ABG).

Had a temp of 100.0, was mentioned he had a bacterial inf going on. Gave him NS & was dc next day c dx of post dehydration.

I called the hospital (while I'm following the ambulance) where he's receiving his chemo to advise he wouldn't be in, as he was on the way to the hospital

due to his resp distress. Nurse answered me c "well, we've already ordered his drugs from pharmacy"....well excuse me!!!!!!

He was sent home c out the DR calling me, I had to work (our regular PCP was out of town, so had to deal c his associate) I was out work, & of course had a ton of questions to ask.

So, today Monday, I called the oncologist DR to ask what should we do since we missed last weeks tx, and they didn't have a clue Roy was in hospital. I told them what had happened & they never received a report from hospital.

I then had to call PCP and have them fax a copy of report to oncology.

I also told them that on Sunday AM, Roy vomited again (nothing new there), but this time he was yawning while retching, which seemed real odd to me.

His BP was high, but not terribly, but pulse was 132. His nails didn't turn blue like they had on Fri, & I don't have a pulse ox at home, so I waited 30minutes before I felt it was safe to leave to work.

Oncology Dr called back & wants to see us tomorrow.

WHAT WILL THIS BE ABOUT???? Anyone have a clue??????

This is what ticks me off..should I have someone here all the time here at the house c Roy? Do I need an O2 tank, pulse ox machine?????

I feel so left out in the dark.

Anyone have a clue to help?

Questions to ask tomorrow????

Thanks gang, I appreciate everyones support!

I don't want something bad to happen while I'm at work, only because the people who know the truth, aren't telling me what I should know.

I couldn't live c the guilt.

I'm his wife 1st, then nurse, hard to differentiate the two sometimes, I believe it's harder knowing/suspecting the truth...so just give it to me!!!

Love/peace

Sherri

leslie :-D · Sep 14, 2004

I'm his wife 1st, then nurse, hard to differentiate the two sometimes, I believe it's harder knowing/suspecting the truth...so just give it to me!!!
Love/peace
Sherri

hi sherri,

did you ever get around to asking the oncologist, roy's prognosis?

also, what he's been enduring, is he comfortable?

any treatments received, are they helping?

difficult questions.

perhaps, more difficult answers.

and if you are looking for the truth, the oncologist has a duty to tell you so, if you've asked.

wishing you peace,

leslie xo

FranEMTnurse, CNA, LPN, EMT-I · Sep 14, 2004

I'm with you, Sherri. I have an ongoing struggle with my own PCP concerning not being forthright and honest. How in the world do they expect us to respond effectively if we don't know what's going on??? I have even gone so far as to show him in writing proof of what I knew what I was talking about, and he didn't buy it.

I wish I could offer you some suggestions, but I'm at a loss there, sinse I don't know enough about the chemo treatments and all the other dx Roy has. Girl you are having some battle there. I will pray for you and Roy. I can at least do that. You desperately need some answers. It's sooo frustrating when they won't be up front with you.

beckymcrn · Sep 14, 2004

I've read the whole post and repys my heart goes out to you. My prayers are also with you.

I agree with all the post that tell you you need to get prognosis from the doctor. Write your questions down so you do not forget what you want to ask. Make sure he /she answers your questions. You need to know if this treatment is really helping him. As hard as it is you may have to deciede if the chemo is actually worth it considering how sick your husband is. I would also approach the hospice issue again too. Hospice is there to help in these situations. There have been patients discharge from hospice care because they got better. SO just because you ask for it does not mean you have given up hope. I think the major problem with hospice is that the docs wait until the very last second for a refferal and the patient and family do not have time to fully use the service. By the way your husband can get chemo on hospice if it is pallative.

Again my thoughts and prayers are with you.

KUDOS to yourr staff at work they sound wonderful!