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Another Update. Re-TURB cancelled!!!

11 years 9 months ago - 11 years 9 months ago #24716 by Webs
You will need to take that month between chemo and surgery. It takes a while to build up some energy. They wouldn't allow me to get my port out till it had been a month and that was a minor surgery. By the way if you are hard to stick for blood draws and infusions get a port installed. it was the best thing i did to get ready for chemo.


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11 years 9 months ago #24709 by mmc
Everything on your hydration list looks ok except the Starbucks coffee drinks. Coffee is a diuretic.

You may also want to add water (best thing there is for hydration) and cranberry juice to the list.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 9 months ago #24708 by Sonya1
Thank you so much, that was enormously helpful. I have friends who will drive me when needed and same thing, I am usualy on that end of these type of things, I help others so it is very hard to be the one in need. When it is over, do you think I should take a month to recover before i get surgery? Will they be able to tell if it worked? will the remaining one cm of cancer in my bladder now get killed off? I am going alone to the first session if I feel sick I can call someone to take me home. I am good with drinking the Odwalla products, soy protein shakes and I can make my own. i also like to drink a lot of ice tea, snapple products, starbucks coffee drinks, and fruit juices so I think I can stay hydrated.

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11 years 9 months ago #24682 by Webs
I gained weight on this protocal because of the steroids they give you. Hopefully you will experience the same thing. Food did not taste good, but it did not taste bad either just kind of bland. Some foods I couldn't touch and cooking something I truly enjoy made me nauses. Milkshakes worked well and peanut butter. Room temprature foods tasted the best. Remember to get your protein in every day it is important. They make peanut butter powder that you can add to those shakes.

As for driving if it's not to far you can drive for most things. I had to drive myself to most of my appointments. I never drove myself on infusion days though. You need a driver on those days. You will be tired and could have reactions it is safer to have a driver. If you feel really exhausted please don't drive. At one point I had an appointment and no one could take me. I felt really exhausted and to scared to drive myself and called my husband. He told his work I had an emergency and came home and took me. Turns out my blood count was down to 6.5 and I had to be admitted straight to emergency room and get a blood transfusion. The point is pay attention to what your body is telling you and get help when you need it.

I believe you said you live alone? Don't forget to ask friends for help when you need it. I had friends that were happy to drive me to appointments, pick up my kids, cook meals. It felt funny letting them because I am usually helping everyone out. I had to sit back and let them take care of me. I met a women in Chemo who lived alone so her Bunco Team was taking it in turns to get her to all her appointments and things.

You will be able to do things as long as you take it easy. I am a very active person so slowing down was hard for me. Well until the drugs had totally exhausted me. I took up knitting which is a great stress reliever. You might also find some new activities to keep you busy.

Hope this was helpful. By the way the first infusion was not as bad as I had feared, but it does hve a cumulative effect keep that in mind when you are planning things. Sorry for all the spelling errors still having brain glitches. Finished chemo in Nov.


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11 years 9 months ago #24680 by Sonya1
I was able to meet my new oncologist yesterday and for sure he will be using Gemcitabine and Cisplatin. He will start the chemo on March 30th. I will take 5 months off of work. I will get a permanent port put in but the first doses will be through a pic line. he will give me an anti-nausea med in the line and they will watch me for a few hours to see how I react. He assured me he will do everything he can to get me through it re meds, monitoring blood counts and liver enzymes and keep me hydrated should I not be able to keep food down. He explained how difficult this will be and effects will be felt immediately within the first 24 hours. he also said there are no guarantees with chemo, either it works or it doesn't. I don't know if there is an exact way to monitor the lymph nodes, as micromets do not show on a PET/CT. They will biopsy the bladder and see what's there when it is over after 3 months, but the lymphatics are the real problem. I declined to get radiation on top of this. He said it takes at east a month to recover enough to get the RC. He stressed the importance of keeping positive. I go in next wed to finalize the protocol, he will talk to both uros and get insurance approval. This visit was so overwheming I didn't take notes but hope to on Weds. I am so sad to stop working and not have something to take my mind off of this for the duration. I hope I am well enough to at least do gardening or home projects. Maybe walking around. I am normaly very active and it will be hard to adjust to a sedentary life. I didn't ask about driving. I also was recently able to get my weight up to 114 and really can't afford to lose weight. I hope I am over reacting.:S

Thanks to all who responded it is very helpful.

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11 years 9 months ago #24678 by Webs
Hi Sonya,

I had the exact same thing as Gracie. I was also extremely fatigued throught the course of treatment, but like her it was after my surgery so my body was dealing with a lot. I do know there are others that felt well enough to work part time. It is a very individual process. If you have any questions please let us know we are here for you.


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