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Hi. I had both chemo, Gem/Cis and radiation in combination with Xeloda. I tolerated Gem/Cis really well and am still receiving it. The radiation was difficult on me. I think radiation side effects for CC are different than that of breast cancer, because they’re aiming the radiation near the GI tract, so you tend to get some GI side effects, at least with my experience. I had irritation to my esophagus and stomach. Bad acid reflux with lots of vomiting towards the end. But I did get better 2 wks after radiation ended, just like my Dr’s said.
My experience with breast cancer patients who have received radiation is they seem to suffer from fatigue, radiation burns and sometimes lymphedema. I did not get any radiation burns but a slight tan on my skin. My oncologist explained it to me that with breast cancer patients they are radiating tissue and they radiate you all the way to your skin, so burns are very, very common. But with CC, they were radiating an organ so the goal was to keep it internal, so no burns for me.
From your post, it sounds like you are now breast cancer free so congratulations on that!! How wonderful you did not get a lot of side effects when you had chemo and radiation. I have spoken with some breast cancer patients when I get chemo and they all seem to have such a rough time with chemo, I feel so bad.
Best wishes to you and your husband. It is a hard decision as what to do post resection. I had 3 opinions form major medical centers and they basically all told me something different.Take care!
Susie
Tiffany,
I don’t think there is a”set” # of chemo treatments you get unless you are doing it for post resection prevention or as part of a clinical trial. I think it’s a lot of let’s do X number of rounds, see how you respond and go from there. For many people with this disease they will be on chemo forever. The good news is, so many people on this site seem to tolerate chemo so well. It’s amazing how tough people are on this site and I think it’s inspirational.
I was ordered a total of 12 doses post resection and then a scan will be done and then we go from there. I have had 10 so far of the infamous Gem/Cis. People are getting excited for me because I’m almost “done”. Thanks to my last ct I may not be done, so it’s hard to share others excitement.
I agree with Pam. People just assume it’s breast cancer if you’re a young female. It seems pretty much no one knows about this cancer, which is a shame.Best wishes and take care!
Susie
Jelizpar,
I know Dr Marsh from UPMC. He is such a sweetie and an excellent surgeon. I truly believe he really cares about his patients. His colleague Dr David Geller also from UPMC did my resection. They are both such wonderful surgeons.
I’m so happy for you both. I hope your husband has a speedy recovery!
Best wishes!
Susie
I took xeloda during radiation and didn’t have any side effects. I think it was a lower dose since it was combined with radiation, though. I know a lot of people on here of had hand/foot issues, peeling skin on their feet. My oncologsit said she didn’t think I would get this side effect at the dose I was on. I’m confused about the clinical trial. Is there another medication being used in combination with the xeloda? Best of luck to you with the treatment. I hope you are in the 10%!!!
Best wishes!
Susie
Yes, my tumor was intrahepatic, all in the liver. What I mean by questionable recurrence on my scan is there were a few spots on my liver that reacted differently to the ct dye. They are small areas, measured in millimeters, per my oncologist too small to biopsy and too small to show up on a PET scan. My oncologist believes they are changes to my liver caused by radiation. My radiation oncologist does not believe they are post radiation changes, but won’t come out and say they are cancer. (I told him he is like a politician, won’t take a firm stand on the issues at hand. We all laughed at this). Chances are they are cancer but I’m already getting chemo, Gem/Cis. This chemo is still part of my adjuvant chemo post resection. I get another scan after I finish chemo, end of February, to see what is going on. I don’t feel the need for another opinion yet because I am already getting the standard Gem/Cis. 3 more doses to go. If there are multiple spots of recurrence in my liver, I wouldn’t be a surgical candidate and I’m not sure I would go down the radiation road again. That doesn’t mean I regret doing the original radiation. And I don’t mean to discourage others from doing it. Everyone is different, with different responses and side effects. I’m going to see what happens after the Gem/Cis completes and go from there. I’m not sure where exactly I will be going, but that is the plan.
I’m glad chemo is going well for you so far, Derin. My only side effect from the chemo is low white cells and I get neupogen for that. I think it’s great they got clean margins on your surgery. I hope you continue to do well with chemo.
Take care!
SusieDarin,
Hi, I’m sorry I think I missed your post. I had a resection with clean margins in May and I received 3 cycles of Gem/Cis, 2wks on, 1 wk off, 6 wks of chemo radiation with Xeloda, and then 3 more cycles of Gem/Cis.
So, I did receive both chemo and radiation after resection, just as it appears Dr Javle has recommended for you.
I had a large intrahepatic tumor and had my left lobe removed. One of my margins was close at 2mm.
My latest scan showed questionable recurrence vs changes from radiation.
As others have mentioned, adjuvant therapy is debated and different facilities will give you different answers.
I decided to do it all because I am 32 and was otherwise healthy.
I handle chemo very well but radiation was very hard on me towards the end. However, I did get better 2 wks after it ended.
I worked full time during this, just taking days off for chemo and leaving a little early for radiation. Granted, I work from home, so that obviously helps. I did have to take a few sick days towards the end of radiation.
It is a hard decision and I wish you the best of luck.
One of the things that drives me nuts about this cancer is there is not a definitive standard of care so it appears the patient ends up deciding a lot about their treatment plan.
Since when am I qualified to treat cancer???Best wishes!
Susie
Pam, this is a good one. I wish I had known Kris too, I read through her old posts and she seemed so wonderful.
So, where do I begin?
I hate when I go to chemo on Fridays, the nurses ask me if I have plans for the weekend.
I hate that I have a huge scar on my abdomen and darker skin from radiation and I will never look the same as I did before the cancer.
I hate that I am so obsessed with my bowel habits.
It’s like I’m 80.I hate that my 33 year old husband has to take his wife to chemo.
I hate giving myself Neupogen shots. I’m a nurse and I’ve given other people thousand of shots, but it’s no fun doing it to yourself.
I hate I have to wear certain clothes to cover up my port, but I am glad I got the port.
I hate that people pity me. It is the worst feeling I’ve ever experienced.
I hate that the first thing I do in the morning is check my eyes to make sure they’re not yellow.
I hate the way CT dye feels. It’s weird.
I’m sure I will think of more!!
Take care!
Susie
Andrew,
I always love your posts and the way you tease your sister. I cope with all of this much like the way you guys do. Best of luck to your sister and her treatment. I think I mentioned before that I have a port and I am really glad I got it. I’ve had to adjust my wardrobe so it stays concealed, but it’s not so bad.
Please keep us posted on how she does. I haven’t received that chemo cocktail, so I can’t really give any advice on side effects.
And, by the way, I am a terrible skier, but I still enjoy it!! Haven’t done it since I’ve started cancer treatment because I’ve been a little afraid but also because we have not had a good season. I’m thinking of giving it a go next weekend.Best wishes!
Susie
And I have not had any superhuman powers kick in after radiation either, but I do watch a lot of bad TV. My favorite is The Bachelor. I should be embarrassed, but I’m not, I LOVE it!!
Kris,
When my oncologist presented my chemo options to me, she said we would do 2 agents. It wasn’t discussed to do Gemzar alone. She said it was between Gem/Cis and Gem/Ox. I asked which she would recommend and she recommended the Gem/Cis because she told me Ox causes more neuropathy. So that leads me to believe the Cisplatin might not cause as much numbness/tingling so maybe will be an option for you.
Everyone is different, but I handle this combo very well with only side effects being low white blood cells.
I will be curious to hear what your surgeon says about the pump, keep us posted.
Best wishes!Susie
I ran into something similar when I tried to get a second opinion at Mayo. I had finished chemo and was about to start radiation but wanted a second opinion before I started radiation. They said they wouldn’t see me if I was already involved in a treatment plan at another hospital. I explained I was going there for a second opinion about a treatment I haven’t started yet and was able to get an appointment. I did find it odd, though. I never thought I wouldn’t be able to get a second opinion during active treatment.
Best wishes,
Susie
Tiff,
I wouldn’t worry so much about the test result. Mine was normal when I was diagnosed even though I had a big tumor. Like Eli, said, if it spikes that may be cause for concern, but I don’t think gradual fluctuations really tell you anything.
Best wishes!
Susie
Dear Eriq,
Best of luck on the Tarceva, I hope it works well for you. I hope you get the pain under control. Enjoy Alaska, it is beautiful!!
Best wishes!
Susie
