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6 years 7 months ago #44331 by jimswife
Darned auto spell..."Bly people here...not NOT people here".

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6 years 7 months ago #44330 by jimswife
Mike, sounds a lot like Jim's regime, minus Avastin/ placebo. Fingers, toes, eyes etc crossed you have the good results Jim did! Not people here can understand being eager to start chemo, it's doing something I take the beast, the b**tard cancer BC! Prayers coming o you.

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6 years 7 months ago - 6 years 7 months ago #44325 by mmc
See? Isn't this just a great place?!?!

Thanks for the tons of great info Cynthia! Practical advice is welcome and appreciated!

You too Ann. I read the story you linked to. Makes sense. Good story. I will keep that in mind.

According to my docs, some chemo is harder than others and bladder cancer chemo is in the middle.
We shall see....

Seems weird but I know you folks will understand what I mean. I'm really looking forward to starting chemo tomorrow! How sick in the head does THAT sound? I can't finish if I don't start so the sooner I start, the sooner I finish! :woohoo:

Hoping for weight loss but not too extreme and certainly not hoping to feel terrible to get there. I don't want much, do I? ;)

My chemo regimen includes the chemo drugs Cisplatin and Gemcitabine and either the placebo or Avastin on day one. For nausea, Emend for the first three days including day 1. It also includes Dexamethasone, and Zofran (both twice a day on day 2 through day 4) even if there is no nausea. This is followed by Zofran for days 5 through 7 only if I have nausea. Day 8 I get another dose of Gemcitabine and nothing else. Then day 9 Through 21 I take Zofran as needed. Then I start all over again. I will be getting 6 cycles with a CT scan after 3 or 4.

Mike

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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6 years 7 months ago #44324 by pemquid
Mike--

I've not been through chemo, but have been following the blog postings of a young woman with leukemia that are posted in the NY Times ("Life Interrupted"). She had a very interesting piece a while back about food, and mentions that associating certain foods with chemo makes them very unappealing. later(similar to what Cynthia wrote here about chicken and spinach). She therefore says she tries "not to mix nausea and my favorite foods — because I have found that it confuses not only the taste buds, but also the emotion and memory of eating itself." http://well.blogs.nytimes.com/2012/12/13/life-interrupted-my-mothers-cooking/

Wishing you the very best in your onward journey, hopefully back to full recovery.

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
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6 years 7 months ago - 7 months 2 weeks ago #44322 by Cynthia
When you had your port put in I thought about posting with advise but realized that the only thing I had to add was make sure to not let them place it where your bra strap rubbed on it..........didn't seem to be relevant so I skipped it.

Knowing you there is little I can tell you about chemo but here goes my best advise after 20 times to infusion I have few tips.

1. Never let your stomach get empty, if you do you will get sick every time. Always keep a pack of saltines and a juice box with you.

2. If your nausea meds are not working talk to them about taking them proactively. I found starting before the nausea was the only way for me.

3. If you have any symptom a snivel a slight change in anything no matter how insignificant talk to your medical team about it! This is the most important thing we can ever tell anyone doing chemo. Your immune system is going to take a beating and a small thing can become a big thing very quickly if not addressed. Park stoic at the door this is not about complaining it is about giving possible critical information.

4. At some point for most of us chemo does affect our memory. I was so bad at one point that a friend threatened to pin a if lost return to note on my back. It came back fortunately no better than before but for a while invest in post a note stock.

5. Don't forget your need for extra protein your killing off cells and they need the right building blocks to rebuild. I craved chicken breast and spinach the whole way though chemo. I was just recently I could eat either again, chemo was over I turned green for years when I saw either.

6. If they tell you that you will lost your hair go ahead and shave it about the time they tell you it should happen. Waiting is like water torture and upsetting when it finally happens. I lost mine twice and tried waiting the first and the second I just did it and it was much easier and neater.

7. Like BCG the side effect can be cumulative, rest when you are tired eat even if you don't want to, exercise when you can. Cut yourself some slack it is hard sometimes but the reality is that this is one time in life you have to put yourself first and take really good care of you.

I wish I could tell you that the first day I walked in ready to kick cancer in the butt. But I can't the first day I was really afraid, the second day I was ready to kick butt though.

I will be down in Boston for my regular check up Friday but I expect to see a post from you telling us how it is going.

You will be in my thoughts.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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6 years 7 months ago #44309 by Jmema
Mike...you are right about the port. It is just so painless and easy. I was in a room yesterday with 4 other warriors and 3 of us had ports and I felt so sorry for the one lady who did not but she had great veins...which I do not.
We are so lucky to have our cancer center here in our little corner of Northwest CT.and it' only 20 miles from my house. They were private up until a few months ago and now have been bought by Smilow Cancer Center at Yale in New Haven and they have retained the entire staff so we are more than lucky.
Second chemo down for this round and 1 to go next week. Feel a little warm, a little headache but no biggie, can't sleep but no biggie.
Only a few more days. Make sure you keep well hydrated before your chemo. It really helps.
Blessings.....Jean
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