Hey Debbie-here is a copy of what I think you were talking about. The first is general stuff and the second list is Dr. questions. -Izzy
To get prepared for tx, remember that once you start your Ribavarin you need to eat it with fat. Avocados are good, ice cream was Sooooo good and I ate it like crazy to begin with. Didn't feel like eating anything else for awhile. Ribavarin needs to be eaten with fat, quite a bit of fat to be absorbed, so think about that before tx. get something you like to eat to put in your fridge. You may not want to go out much once tx starts.
Hair color is not something I would worry about too much. I didn't even care after while. I did have my hair colored towards the end of tx and I usually have light streaks. Bleach isn't good. Tell your hairdesser you are on chemo. they won't put bleach near your roots.
Sometimes, your skin gets a bit aligator like, so something like bath oil or a mositurizer is good! Same for your hair! Heavy duty one! Gold Bond Medicated seems to be mentioned alot here as one that works well.
What else was there?....stomach...I had problems and used tagament and then the script for Aciphex. Headaches, migraines....if you are prone, get a script for something for pain. Usually something you already have can be exaserbated on tx.
A heating pad or lots of blankets for the chills is a good thing to have around. I remember my first shot. It was 80 degrees and I was freezing! I had my daughter in law pile a ton of covers and get me a wool hat! That was the only time that happened!
Toothpaste can start to make your mouth burn. Sensidyne helps, as well as a soft toothbrush.
Don't fret about hair falling out in the shower...Hang it up on the wall..Make something creative..kidding, but not. You don't want it down the drain, as you will be calling roter router out several times! Better to hang it on the walls! LOL
Get a pill box so you never forget those Riba's and as time goes on the other things you may take. It is so easy to forget on tx.
Ok-this would be the Doc list. I am not good with the cut/paste thing!
Find out if it will be weight based Riba (we want it to be weight based)
How often will they do PCRs. Will he do a 4 week and if UND how much longer will you go.
Ask for a standing order for a CBC so you can check to see if your HGB and WBC are high enough. Riba can cause them to drop.
What about rescue drugs. Will they give you procrit or neupogen if your HGB/WBC do fall.
Problems sleeping-will they give you anything. Pain from the neupogen-what will they give you.
Should you start on an antidepressant befre tx?
Stomach upsets from the meds-what to take.
Ask about tylenol as well as any interactions meds you are currently on may have with tx/rescue drugs.
Will they do baseline tests before starting tx???
Who teaches u to administer the shots?
When is the first appt after starting tx?
Eye exam before treatment? Very important apparently.
Get copies of all labs.
That's it. Just having this in my hand for the first appt really helped keep me focused and led our discussion. I brought it with me to my family doc also. She was so helpful-I bet I left there with 5 just in case prescriptions in my hands!
I would say buy a toddler toothbrush and biotene toothpaste. These will help when mouth gets sore.
Also, I took a real good B complex. When I did research, the chemo agent destroys the vit B.
I drank 100% grape juice everyday. It kept my blood count from going to low and helped keep my mouth moist.
Yogurts keeps good bacteria in you. Eat it.
Of course, drink plenty of water.
Gold Bond with GREEN cap.
Make a rice sock by getting a tight weaved long sock. Fill it half way with reg. rice. Sew the top. Add it to freezer or microwave for up to two minutes. It forms nicely around neck and shoulders. Cold always felt best for my head. I would put it on my eyes.
I agree with Isobella, those are good questions. The only thing I don't do is eat a lot of high fat foods. I do eat some especially first thing in the morning as in I'm addicted to toaster pastries and ice cream at night but find as long as I take the riba with food the tummy doesn't act up too much. It may be that high fat helps with absorbtion of riba but I don't want to run the cholesterol up too high and so far have been maintaining a good weight. Some lose weight on tx, others gain. Good luck at the docs!!
Who did you call when you really needed help with one of your sx?
I came in here and asked what to do most times...then called the PA or Nurse and told them what was wrong and what I thought i needed and they would talk to the doctor and take care of it.
My doctor wasn't really "hip" into sides and how to take care of them when I started treatment. He wasn't really very current on the journals or studies or anything. I think I really bugged him at first even though I tried hard to go easy on him. Then Dr. Jacobson called him one day when I went to a consult with him and he told my doc how knowledgable and educated I was in the whole hep world....well.....after that my doc acted like I was the star pupil! How dare a patient know information that he didn't! So..he started reading all the studies and journals and talking to Dr. J...and now he knows a TON of stuff!!!!!
Sometimes - they do NOT know what is the most current up to date way to treat things. Do NOT hesistate to say "well one of my friends in my support group said .... (NEVER say ONLINE or INTERNET or his head will blow off!")
This disease has major bits of new info coming out all of the time that most doctors don't ever think to learn about. They say OK geno 1 to 48 weeks of peg and riba goodbye. But that is often NOT enough to take care of us. And we have to be proactive and make sure that we are really our own best advocate.
Plus - when I finally finished and got my SVR results - he called me directly to congratulate me and thank me for his other patients and he wasn't being sarcastic. I guess sometimes they just need a gentle push to understand a "hemo of 8 means EPOGEN FAST!" :)
Just trying to encourage you to monitor your OWN test results. Get a copy of every single one. Sometimes........things fall thru the crack and the doctor has many more patients than just you. NO ONE will care more about their treatment than you will and it's up to YOU to make sure the proper things are being done to make it easier.
(Gosh sorry that was so LONG but it's REALLY important!)
I am on the program at Cedars Sinai and have no complaints about the care. The staff is very caring and attentive and always promptly return calls. I have complete confidence in the hep doctor and her assistants.
I felt dr. & phys. assistant covered all the questions that Isabella menioned except i could have used more training for the injection process. make sure you have them tell you everything about injection.
The problems I had as injections moved on were things like getting the damn cap off the needle. some of the caps seemed to be glued. gunned However the CS pharmacy is wonderful and were happy to keep me well supplied with sharps because in the beginning i broke them, stabbed my finger with them, etc. But now it is a simple procedure lol.
I wish you the best with your treatment and hope you keep posting about your progress.
carnation instant breakfast, add icecream and milk, sit on couch and mix w/fork.
ramen oodles of noodles, very thin instant mashed potatoes add sour cream also to get a little more substance. campbels canned cheese soup. thin spaghetti w/ butter cut up. These are some of the things that just slithered down my throat when I really didn't feel like eating, I also ate this stuff when I had braces 8 years ago. I had a problem with anything too dry.
When my mouth hurt bad I mixed liquid maalox w/liquid cherry childrens benadryl. That helped.
Grandma, I had the same problems with the needle caps and darn near ran one through my finger----ouch.
I did not have this forum or any doctor support all thru tx. It was like pulling teeth to get soma for the muscles, I never like vicodan which is what they wanted to give me. I wish, I wish that I had these good people like you are going to have all thru tx.
This is the shopping list I used from one of the discussion threads. I feel as if I’ve plagiarized someone’s stuff putting this back on the forum without the name of the person who wrote it – I looked for it again but can’t find it. I modified the format/content just a little.
Of course I didn’t purchase Everything – some of things are a ‘wait and see’ if I need them. I hope to start treatment in two more days. Several of the suggestions made me laugh – and that always feels good.
So – thank – you - to the person who shared this – it was very helpful.
The back scratcher, yes!
oldest most soft jammies
Tylenol - extra strength
icy hot cream
lavender bath therapy
•Aveeno oatmeal bath
•Aveeno afterbath body oil
colloidal oatmeal bath
•antihistamine like benedryl or chlorophinerimine At night
•loratidine (Claritin) during the day
•Systane eye drops
•magic mouthwash (mouth itch)
•options - I use benadryl cream and Eucerin calming cream, these 2 in combination really seem to help take baths with dead sea salts and use dead sea mud soap from Israel
•Gold Bond Triple Action Relief for Extra Dry & Itchy Skin with the green bottle and the red top
wide tooth comb
handy nightstand floss stuff
Aquaphor original ointment
Gold bond powder
Case of water
a private nest away from all if needed
lap top or pc available 24 hours
a do not disturb sign to hang on your front door
maybe a small fridge for your room
Direct bill pay
a car with GPS
a car which will remind you that you need fuel ; ]
a car which will remind you to go directly home, don't answer the phone. ; ]
then later on a birka . ; ]
later still, grace. Just grace and it doesn't even cost much. ; ]
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