Its been a long week

Bear23

Well its been a really long week. I got the results from my lung biopsy Wed. Not good, cancer. The mets are small, all smaller than 1 cm, but there are quite a few in both lungs. Met with the onc today. I'm glad I was able to get in right away. He had a few options for me. I think I am going to try 5Fu, leuco and avastin. He said a four week cycle with the 5Fu on 1st and 3rd weeks and the avastin on 1,2, and 3, The fourth week will be off. I had the neuropathy with the folfox, so his suggestion is to try this for 3 months and the check the scans. His take is to save the bigger guns for later. Other options were folfox again with avastin. He said I won't have as many side effects with this treatment. Right now my health is good. Its really been hard to here this news of mets. I am 10 months off chemo. Now have to start again... He was going to try to get the biopsy tested for KRAS, but it was a needle biopsy so may not be able to.

Anybody have any experience with the avastin, 5Fu and leco without the oxi?

I have to have my port reinstalled next Wed and start treatments next Friday. Thinking of taking a weekend away with my hubby and Victoria Secrets before all of this.

Bear23

Sundanceh

Avastin and Xeloda
Hi Bear

At the end of my treatment, I was doing Avastin and Xeloda (pill form of 5fu). I have done the pump however and tolerated that well.

Another time I was doing Folfox but had issues like all of us do.

When we gave up the Oxy, we finished up with Avastin and Xeloda.

Avastin over the time I took it has given me a sometime irregular heartbeat and I find myself catching myself...over time Avastin can lead to congestive heart failure, but not sure what length of time that is - I did it for about 8 months.

Xeloda was hard on my feet and hard on my stomach...5fu pump I tolerated.

Recurrence is always the hardest thing for all of us - because we know what we are in for the 2nd time 'round.

A get away weekend sounds lovely and a good idea - once you're "back in", well...now is a good time alright.

I wish you all the best - Craig

geotina

Chemo
My husband is on a similar regimen of chemo. He finished the whole Folfox/Oxy thing end of October. Had a small break, few weeks, to regroup. Had scans that showed chemo is working well for him so now his program is, via IV, 5FU and leucovorin every week (takes about an hour) adding avastin every other week. This goes on for (I think) 6 treatments then a 2 week break then back on. He tolerates it well. He seems fatigued to me but then he continues to work full time and that combined with chemo and he is just tired. Other than just plain tired he does not complain of any side effects. I ask him about nausea and stuff and he just says no, what's to eat! Take care - Tina

ganders2

Its been a long weed
Hello,
I just finished 6 months of taking 5FU and Leucovorin once/week for 3 weeks, avastin on weeks 1 and 3 and the fourth week off. I was able to keep working for the first 3 1/2 months but eventually the fatigue wore me out and I had to stop altogether. The fatigue has gotten quite a bit better, but still limits what I can do each day.
That was the worst side effect, but I had a lot of trouble with diarrhea, even though I had a prescription for lomotil and had 3 shots of sandostatin. The diarrhea and general GI sensitivity lasted for about a month after I finished treatment. All better now though.
At the beginning of the last cycle, I also started have terribly watery eyes. It turns out this is a side effect of the 5FU and more annoying than anything else. It is still continuing to be a problem even though I finished the chemo 5 weeks ago. My eye doctor said it can last up to 6 months.
The really good news about this treatment is that there is none of the side effects from oxyliplatin like the sensitivity to cold. A little neuropathy in my hands but nothing like it was with the oxy.
I thought it was a relatively better treatment than the Folfiri (although there is nothing "better" about any of this!!!!)
Good luck - if I can help in anyway, let me know!
Gini

Bear23

ganders2 said:

Its been a long weed
Hello,
I just finished 6 months of taking 5FU and Leucovorin once/week for 3 weeks, avastin on weeks 1 and 3 and the fourth week off. I was able to keep working for the first 3 1/2 months but eventually the fatigue wore me out and I had to stop altogether. The fatigue has gotten quite a bit better, but still limits what I can do each day.
That was the worst side effect, but I had a lot of trouble with diarrhea, even though I had a prescription for lomotil and had 3 shots of sandostatin. The diarrhea and general GI sensitivity lasted for about a month after I finished treatment. All better now though.
At the beginning of the last cycle, I also started have terribly watery eyes. It turns out this is a side effect of the 5FU and more annoying than anything else. It is still continuing to be a problem even though I finished the chemo 5 weeks ago. My eye doctor said it can last up to 6 months.
The really good news about this treatment is that there is none of the side effects from oxyliplatin like the sensitivity to cold. A little neuropathy in my hands but nothing like it was with the oxy.
I thought it was a relatively better treatment than the Folfiri (although there is nothing "better" about any of this!!!!)
Good luck - if I can help in anyway, let me know!
Gini

Thanks
Thanks for the news. I work with special ed elementary students so I need my energy. I got quite tired with the folfox at the end. I hope this isn't too bad.

Bear

Paula G.

Bear23 said:

Thanks
Thanks for the news. I work with special ed elementary students so I need my energy. I got quite tired with the folfox at the end. I hope this isn't too bad.

Bear

My huband
Hi Bear, Sorry about your news. My husband has been on Folfox and had a reaction to the OXY so treatments 9-14 were without OXY. He is now on Xeloda + Avastin every three weeks. He seems to feel better on this mix. He had problems with his feet hurting so they lowered the dose. He was started on a very high dose 5 pills twice a day. He is now taking 4 pills twice a day. He had a scan in December and it showed it was stable. He will have another in a month or so. His CEA has come down but I'm not sure if we can go by that always or not. We are taking it as a good sign.
His Onc did give him ritalin for fatgue. It helped but he didn't sleep well then so he isn't taking it. He is still tired but not as bad. Hope this helps. Good luck, Paula