1st week of chemo

Holly,

Maybe this is something that would help:
blcwebcafe.org/neohyperc.asp

Two things come to my mind...you need to ask for more help with everything and you shouldn't hesitate to take anything that might help regarding medications to help you through all these difficult complications and treatments.

All the best,
Wendy

Holly...do you have access to a stoma nurse nearby? Can you ask for one?...you need to learn how to self-cath...and again guys forgive my ignorance on neo-bladders...i'm just assuming you need to be able to do that when you're having problems and definately putting in about 30cc's of saline solution will break up mucuus.(and ask for a prescription for that...i know you can make it but you don't have to and its cheap) That slimy stuff....yep its mucuss.....looks like egg-drop soup!! See if your docs there will get you in to see a stoma nurse...most major hospitals have them.......gee even here we have 3 of them!! I know after my surgery at The Cleveland Clinic they gave me a hotline number to the Stoma Clinic and i could call anytime day or night and could get questions answered...i still can. Sometimes when i eat garlic or onions i get a rather pungent smell in the urine but my guess is you haven't done this???...they are a great anti-inflammatory also. Anyway call the doctor...you don't want this to go unchecked...you don't need a kidney infection. Forgive my asking about drugs...there are just so many side effects of combining drugs as if the chemo isn't bad enough. I generally drive the docs nuts with my questioning and i've actually caught them a few times with a bad combination so i try to stay dilligent. Did i mention CALL THE DOCTOR............Pat

Hi everyone,

  Well, I would be the last person to self medicate. In my healthy years I take less than 5 ibuprophen a year. I am so afraid of drugs and needles that I gave birth without an IV or even a tylenol. Taking antidepressants is something they want me to do although I don't believe I am depressed - so I refuse. They prescribed the bentyl recently and I only take it when the spasms are real bad - which is what the Dr's here want me to do. The zanex helps after these episodes and also for resting during the 3-5 days of "ickys" after chemo - again they suggest this. I do not take any antacids ( the cdiff connection to those things has scarred me mentally and I would have to be forced to take a pepcid or the like), no antihistamines, no supplements or over the counter stuff. I do rinse my mouth with baking soda water a few times a day to keep from mouth sores. They have given me compazine for when the nausea is very bad. Again - Iam cautious on taking meds even when they prescribe ones for comfort. I am diligent on what they tell me I have to take though - like antibiotics when they are prescribed.

  This is the schedule. week 1 - gemzar and cisplatin.
                                weeks 2 &3  gemzar
                                 week 4 off.

  The decadron was in my port with zolfran. I asked about phenegran but they said these were ordered. I also had lasix? a diuretic and peed alot but now my urine is extremely stong and there is mucus but alot of like slime stuff. It is freaking me out. I called Mayo'syesterday and I am sure I will have access to the Dr or his assistant today. They have been very good about that at Mayo's.

  The not fully voiding has been going on for about a week. I massage down on my belly and try to pee more and I do. They did not teach me to self cath at Mayo's. When they removed my catheter, they had me pee and did ultra sounds 3 times and I was completely voiding. Until last week - it appears to have been properly functioning. The strong odor started prior to chemo on Monday and that is why I wonder about a UTI. I asked the Dr here about it but he didn't order a urine test. I have not had a urine test since I left Mayo's. There is no fever ( I take my temp morning and at night) and I have no burning or such going on. This is just very different than how it has been since the RC and it has me concerned. If it is normal for the chemo and drugs they are giving me - so be it. But if it isn't I need to get it straightened out. This is the 1st wek of the 2nd month of chemo . There is 4 months total I am scheduled for.

  Thanks for the input and support. I really don't like to be a whiner. I just was not warned about some of these changes and want to be sure they are not something wrong that is being over looked. Thank Heavens for you wonderful folks and the Mayo's Drs to get me through. Love you all, Holly

Hi Holly
I hope your feeling better today.The Cisplatin really is the devils work it hit me like a ton of bricks every single time.I got cramping really bad during chemotherapy it was impossable to move and I just had to stay rolled over until it went.It does sound as though you may have a UTI though and it may be worth getting your urine checked if its smells strong.Although again that may be an effect of the chemo.
Its really good news that everything clear though and it means you have a great chance of staying well long term.Just keep focusing on that and the chemotherapy will soon pass.
Take care lots of love Claire x

Holly,
Hope by mid week you are able to rally from the cisplatin. That is really yucky stuff. I cannot believe that they are trying to cancel your insurance. It seems to me you should have some legal recourse. Thank goodness your spouse has coverage for you but since this business of BC is so expensive, perhaps it would be better if you were covered by both. This may be something you want to look into when you are feeling better.

Sounds like we have had similiar struggles the last few days. I was so under the weather the last few days that I wasn't even up to reading email. Like Joe, I am receiving MVAC and of course, that includes our lovely cisplatin which just wipes most of us out....first cyle I was so sick the doctor prescribed EMEND and Dexatehasone and so last week I thought I would handle it much better on 2nd go around. It did a great job of helping me keep the food and drink down, but too good a job. I found myself unable to void the next morning, after having drank about 90 oz. of liquids. Odd thing was that I had no bladder pain or even fullness. Didn't want to go into the weekend with an emergency situation, so called my oncologist and went to get catherized. Was weighed the day prior, wearing the same outfit, but weighed 10 lbs. more with all the liquids I had consumed. The doctor ended up giving me a prescription for Flomax but I haven't had a problem since I ceased taking the Emend. If I can find some way to better manage this struggle withi Cisplantin (have two more sessions to go), I'll let you know.
Take care.....sending you prayers and hugs. Melodie

Holly what miligram of Decadron are you taking? You should take your dose before 9Am
and with a full glass of water and food to lessen stomach upset.......Actually a side effect of decadron can be nausea. I wonder why they're not giving you phenergan for the nausea? Really the decadron can be used for any inflammation...they use it a lot in Chrohns desease and for colitis.
I hope Mayo's does a better job than i get at the Cleveland Clinic....my mail goes to everyones station before my surgeon ever sees it...i have to keep on his secretary who tracks it down...last time it took 3 weeks....that was comforting.
Ok if you're not fully voiding you're probably building up bacteria in the bladder...do you cath with saline solution? I'm not sure what they do with the neo-bladder. WE do it with the internal pouches. You've got a lot of muucus in there for a while and it will break up with the saline. A strong odor is an indication of bacteria..hopefully no fever??...pain in the back or flank pain?....
Are you self medicating or did the doctor tell you to take Bentyl (Dicyclomine)? It can interact with antacids like Maalox..antihistamines..corticosterioids like predisone tho i don't know for sure if Decadron falls into this category(my pharmacy skills are lagging!)..and can also react with Xanax and Valium.
At any rate i personally would get back in contact with the team at Mayo...tell them all your symptoms and what you are being given. You don't want this to go unchecked
Love ya....Pat