March 10, 2005 at 2:34 pm #4642B. GreeneMember
None of you need this and I wouldn’t be posting if I weren’t totally desperate. Ron is suffering horribly and I am asking for help from anyone who has gone through this. Mouth sores, nose sores, throat sores, constant twitching of every nerve in his body. Very weak no longer able to eat much. When I think of how hard he has fought and then to have to come to this it is unbearable.
If anyone has any suggestions that might help please please let me know.
I think part of this is again the Drs. who did not put him on all the anitviral, anitfungal meds that someone with no anc count would normally get and I don’t know what happened to my brain I didn’t ask about it. They finally called in alcyclovir but still not the antifungal and when I told them I wanted it just got in a fight with the nurse, who told me if the dr. wanted us to have it he would have given it and wouldn’t put me through to the dr.
I hear prednisone would this help anything since I have no medical advice perhaps you would know.
Anyone who fears chemo and thinks this is the easier way should perhaps think again and try to get a truthful answer on how it really is. Never did he suffer like this with the chemo.even with the stomach mess. He is not able to make a rational decision and I am just trying to hang on to the fact he wanted to be home so badly.
Sorry, BarbraMarch 10, 2005 at 3:07 pm #4643MarshaMember
Did you at any given time have a case manager with your insurance company. If you did or if you can contact one maybe they could help you get thru to your doctor. Also at any time did you have a social worker to talk with to help you thru this process. Do you know a reliable pharmacist who may suggest somethings for the sores. Getting saline solution and something to keep his nose moist may help the sores there. I am sorry you are going thru this. My thoughts and prayers are with you.March 10, 2005 at 3:09 pm #4644SuzanneMember
Barbra, If there isn’t anything out there to effect the disease at this point there must be a way to make him more comfortable. Contact a Dr. that will help-maybe even his previous GP or internist.Ask if his body is able to process the anti biotics and anti fungals. If the only drawback to hospice is no more tx’s see if the medical people you are dealing with are going to give him those anyway. How about the home nurse that came. Do they have any suggestions re keeping him comfortable. You know I am hoping every minute that there is help and a smoother ride for both of you. I know the whole forum’s thoughts and prayers are with you both and that people that have more knowledge about your questions and the process you are going through will answer..March 10, 2005 at 3:15 pm #4645bperMember
You and Ron are in my thoughts.
My Dad used a mouthwash that was prescribed, and ky jelly (that was recommended) was used for his nose.
My parents’ also utilized a travelling nurse. It wasn’t hospice but she became a great advocate and she greatly helped my Mom by coming to the house every other day.
Beth in Toledo, OhioMarch 10, 2005 at 3:15 pm #4646NeilMember
Prednisone might help but the anti fungal should do more. Can’t you bypass the nurse & get to the doc? Would be inclined to be more than forceful.
Have you thought of having hospice come to your home? There are some unbelievable people in some hospice organizations. It might be wise to interview more than one. All you need is a docs recommendation or prescription.
They can provide a home health aide, nurses, chaplin, music therapy, poeple who will come in and read and more. You have your choice of which services you would like. The nurse will have contact with the doc that could improve Rons comfort level.
Before I had contact with hospice I was pretty matter of fact about them. After seeing them in action I was amazed. Not all of them function at the same level. Best to interview more than one.March 10, 2005 at 4:31 pm #4647Sad About DadMember
My father wanted deperately to be at home. But the only problem is that we still wanted so desperately to save him. It was very painful for us to watch him in such horrible pain.
He could not eat. He had a hard time sleeping and he would move from the bed to he couch to chair and back to the bed.
It was painful to watch him try to eat. I realized this at the very end that I had to let him go the look in his eyes while I was trying to get him to eat something and tears were rolling down my face and the way he was looking at me will haunt me for the rest of my life. He was trying so hard to eat and he just couldn’t and it was bring him even more pain to watch me cry and him knowing that he just could not do it. That was when I told my mother that it was time for Hospice to come in and take over that we were not ready for this and never will be and we can not properly take care of him.
They brought much relieve there at the end. They gave him medicine to calm him and relieve the horrible pain he was going through. And they relieved us of the stress of trying to make him comfortable.
None of this is easy and the pain is horrible but you can not do it alone.
I am so sorry. And my heart goes out to you. Because I know the pain you feel and desperation. But you can not do it alone.March 10, 2005 at 6:00 pm #4648shirlsgirlMember
Oh Barbra, I’m so sorry Ron is suffering like that and I am so sorry that you have to see him suffer. I agree with Neil, bypass the nurses and speak directly to the doctor if possible. I can’t believe the nurse had the nerve to argue with you about the antifungal. She was so insensitive…obviously you were concerned and thought that the doc. overlooked prescribing it, the least she could have done was let you speak to him.
I read up a little on the Prednisone …
PREDNISONE (Deltasone®) is a type of medication, called steroid or
corticosteroid, used to provide relief for inflamed areas of the body. It reduces swelling, redness, itching, and allergic reactions, and
may be used to treat severe allergies, skin problems, asthma, arthritis,or many other conditions as determined by your doctor.
Considerations before beginning prednisone
Other medical conditions
Prednisone can worsen some medical conditions. Steroid medications must be used cautiously in patients with osteoporosis or other bone
disease; colitis; diverticulitis; stomach problems; diabetes; fungal,
viral, or bacterial infections; recent surgery or serious injury; heart disease; high blood pressure;
….maybe not a good idea if Ron has an underlying infection.
I’m so sorry you have to go through this.
Thinking of you, JodyMarch 10, 2005 at 6:19 pm #4649shirlsgirlMember
You may have already come across this website but thought I’d pass it along just in case…it mentions home hospice care.
hugs, JodyMarch 10, 2005 at 6:27 pm #4650JimbobMember
So sorry to hear what Ron is going through. I had a touch of it after my SCT. I went thru a “churn and burn” and a shake and bake” reactio as well as the swollen, burning mucus membranes. I was unable to eat or swallow anything for a few days. A sip of water immediatley turnned to thck drool. I was able to get up and run water in my mouth with the suction sucking away the thickening drool. I took at least a half hour several times a day. Thankful I was in the hospital with those things possible.
Get in the doc directly to see what can be done and the social service coordinator for outside assistance. flash: The most caring, knowledgeable and overall helpful people were the nurses in the bmt ward.
My prayers are with you and Rn.
JimMarch 10, 2005 at 6:39 pm #4651gemloyearMember
Barbra, You have received so much good advice here that I don’t know if this will be worth while for you or not. My husband has been very ill this winter, I won’t go into that here, but he was prescibed an anti-fungal med; Nystatin which helped him, he used an oral dose which he swished in his mouth and swallowed.THere is also a cream for typicle use.If you would like more info on these meds go into Medline Plus –Drug information: Nystatin. Have you tried Ensure for him to drink, to give him some nurishment? I hope you are sucessful in cotacting your doc. It’s wonderful here on the forum where everyone is pulling for you and Ron,our prayers are with you.EllieMarch 10, 2005 at 7:20 pm #4652eveMember
my dad used nystatin swish and swallow when he had terrible mouth and throat sores – it really seemed to help him
so sorry to hear that ron and you are suffering so much pain and anxiety
my prayers are with you
eveMarch 10, 2005 at 7:25 pm #4653eveMember
also my dad has no appetite so he has been drinking something called gainers fuel – you mix it with milk – and my dad adds several ice cubes in a blender – it gives you 1000 calories per serving (it tastes much better than ensure – it is used by body builders and dad’s hemodoc said it was ok for him to drink it)
eveMarch 10, 2005 at 7:37 pm #4654B. GreeneMember
It has always been so hard to get through to a dr. from day one BUT finally, he wants us in tomorrow, pretty hard, but we will get there and see if there isn’t something they can do to give him some comfort. He is on the swish and swallow it helps a little, JimBob he understands this thick yuck only too well, gets choked etc. Complicate that with the nose—–
I’ve talked and talked to Hospice but what I won’t do is stop the tx and they won’t allow that. I finally reached one woman who said she would see if there wasn’t someway they could get around it. He can’t breathe without them and that is horrible. So maybe she can work out something.
Will try the KY. This was my thought that someone out there just might have a trick that helps. Isn’t it sad that when there is a whole clinic dealing only with these type of patients that they don’t have the tips and/or willing to pass them along. For the most part the nurses have been wonderful but we lost our really dear one, who took care of him from the beginning, and the one now perhaps came here straight from prison duty.
I plan on having a very serious talk with the dr tomorrow about when I need him I need him, I don’t pester and he knows that so this is ridiculous.
Thanks for your tips. BarbraMarch 10, 2005 at 7:43 pm #4655DonnaMember
Good Luck tomorrow Barbra.
I can truly feel your pain and frustration.
Hang in there, you and Ron are in my prayers.
DonnaMarch 10, 2005 at 7:47 pm #4656TerriMember
Barbra, I wish there were words to say to help you and Ron.
For Mouth sores, I happened on the following it is a mouth wash (says for cancer sores) but boy does it help Bob’s mouth sores. Rincinol P.R.N.
Its an over the counter thing, It comes in a bottle or packets I buy the packets that are one use each.
As far as Bypassing the nurse I can’t believe you are going through this I would keep calling until they put me through. Is he close enough that you can leave and camp at the office til they let you see him. I have never had this problem our Hemo office is so helpful.
Don’t ever apologize for posting and reaching out for help, We are all here for you.
Continued prayers and I hope the doctor is more help to you. there are some good suggestions in the responses as far as Hospice and nurses.
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