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Hi! Caroline Stoufer of Colorado here. I’ve been really busy with the summer season in our tourist town, that I’ve just been blogging. and hadn’t had time for the discussion group. Also my new chemo regimen can really knock me out which means I can’t do as much work. But I’m back!
I am on FOLFOX and have been for 9 treatments. It seems to be working as my last two CT scans this summer show the 12 tumors in my liver as stab;e. A good friend of ours with colon cancer did it for six ttreatments and was pronounced stable. FOLFOX does take it’s toll on the soft tissues of the head.l I have a huge hole in my septem, my esophagus gets sore and I drink aloe juice for that. I worry that it’s killing brain cells and I seem to have chemo brain a lot. I have side effects for which I take a multitude of rx drugs and vitamins. Anyone out there done SIRT spheres? I’m looking at this treatment for down the road. I found a really good doctor that does it.
All for now. Hope everyone is doing as well as can be expected. My prayers are for all of us and our loved ones and caregivers.
Sincerely, Caroline Stoufer of Ouray, Colorado
PS I did the Sorafenib trial in the spring of 2006, but it didn’t work for me. Good luck to those of you giving it a go. Stay out of the sun which can aggravate it.
Dear Peter from Vermont-
Obviously, I am suffering from insomnia at the moment. I’ve been up since 4am, catching up on some paperwork.
I have been taking Xeloda since last summer and I have Gemzar & Avastin infused. I get the steroid dexamethasone (sp?) before infusions and it usually makes it difficult to sleep for the first two nights afterwards. I do have lots of energy the day or two after the steroids, so I like that. Then I hit a chemo slump with aches, pains, fatigue, and queasiness.
I have taken Ambien CR occasionally to sleep, but it really knocks me out, and I am rather groggy the next morning. You do need 8 – 10 hours to sleep on Ambien.
I have also taken Benadryl which one of the oncology nurses told me about. She said she givees her husband Tylenol with Benadryl when he can’t sleep. (I believe this is the Extra-Strength version of Tylenol.) Tylenol is hard on the liver and Ibuprofen affects platelets, so my oncologist has told me to use those sparingly. He also said aspirin will wreak havoc on platelets so I never take it.
I do take Oxycodone sometimes for pain. It makes me drowsy, so I usually just take it at bedtime. While it does help me to fall asleep, I wake up almost every hour after I have taken it. That may be because I’m not taking a large enough dose to overcome the pain, and the pain is waking me up.
Sometimes I try to command myself to sleep, but those steroids can make my mind go 90 miles an hour. I don’t know what woke me up this morning because I haven’t had any steroids recently.
My oncologist and I feel that the Xeloda has been the most effective thing in controlling my tumors in my liver. I usually can’t take it all week because my feet and hands start to swell, but I’ve been tolerating it better lately.
I’d ask your oncologist what he recommends, but these are some of the things I’ve tried.
Good luck and hope this helps,
Dear A –
First of all, I am 52 and have multiple tumors in my liver. I had one large one which was removed a little over a year ago, but more grew back right away. I am on Gemzar, Xeloda, and Avastin. I would say if your father is stable, then he should continue on chemo, and work with MD Anderson if necessary. CC is so rare that I think treating it can be overwhelming to some doctors who don’t have a lot of experience with it.
I have a friend in Denver with slow-growing pancreatic cancer which she has dealt with for four years. She had an ulcer last fall that was life-threatening – probably the result of being on Tarceva for so long. Some chemo can pose a risk for ulcers.
As for Ibuprofen, I know it can affect platelets (which is an issue being on chemo) and Tylenol is hard on the liver, so I now take them as sparingly as possible and alternate between the two. Aspirin is supposed to be deadly on platelets. I have Oxycodone for pain if needed, but it can cause nausea, constipation, and it kind of knocks you out.
The Martin Family blog on this site talks about her experience with Xelox at MD Anderson. I believe the Xeloda has done most of the work in stabilizing my cancer.
Kris – I can’t remember if you are from Natchez, MS, but I talked to my sister-in-law who is a nurse at Baptist Hospital in Jackson, MS. She says Baptist is one of the best hospitals in the region for cancer and they are affiliated with MD Anderson. Leslie, my sister-in-law, is an awesome nurse. Sometimes I wish I could be treated at her hospital because I know she’d be on top of everything.
I guess that’s it for now. I just try to concentrate on enjoying life and not get too down. I did start taking Zoloft back in May to help with depression. I wish I’d taken this stuff a long time ago!
Good luck everyone!
-Caroline StouferJanuary 5, 2007 at 6:21 am in reply to: Any experience with Xeloda, Oxaliplatin & Avastin? #14951
I am doing Gemzar, Avastin, and Xeoloda. I started with Gemzar in May, added Xeolda in June, and Avastin in December. Gemzar is pretty easy to tolerate, but I think chemo side effects are cumulative – the longer you’re on it, the more you feel the side effects. I get steroidsd before my infusions of Gemzar and Avastin. I feel good the day of chemo and the day after and then I hit the wall and go into a chemo slump for a day or two and then start pulling out of it.
I only take half of the Xeloda as what I originally started out on. The Xeloda really seems to have been working well. My scans and bloodwork improved when I started on it. At the higher dose, I was getting swollen joints and bad hand-foot syndrome. So we cut the dose back to half . I take it for about four or five days, then my feet and/or hands swell up, and I go off of it for two to four days.
We started the Avastin after we found that the cancer had gone into my hip bone. I have a scan next week, so that will tell us more. My liver enzymes have been pretty good.
I haven’t had Oxaliplatin, but I know there’s a clinical trial at MD Anderson for Xeloda and Oxaliplatin called “Xelox”. The Martin family blog on this site tells more about her experience in this trial which has been good so far.
Best of luck to you and keep us posted!
I was diagnosed with CC in October 2005. My oncologist is in Grand Junction, Colorado which is a two hour drive from where I live. I had my liver resected in November 2005 at University Hospital in Denver. Unfortunately, my liver grew back with more tumors. I did a clinical trial last spring, but it didn’t work out. I started chemo in May and have stabilized the tumors in my liver. They did find cancer in a lymph node during my surgery and told me my cancer would probably come back which it did. It also went to my hip bone and I had radiation in November to treat that.
I have a really good rapport with my oncologist, and I think that is very critical. I also work hard to maintain a positive attitude for two reasons. One is that it helps fight the cancer, and two is that if the disease does take me, which they tell me it will, I won’t have spent my last days on earth being down, in a bad mood, a burden to others. I do take Zoloft to help combat depression which I wish I had taken years ago!
I am fortunate in that I am self-employed and can work my schedule around my treatments. I have good insurance, a very supportive husband, family, and community.
My husband is from Jackson, Mississippi and he has a sister-in-law who is a nurse there. We’ve heard that the University Hospital in Jackson is very good, as well as the Baptist and the Catholic hospitals. I have heard that University hospitals are usually on the cutting edge and have more access to the most current treatments. I’ve also heard great things about M.D. Anderson, but some people have told me that it is very big and like an assembly line. The Mayo Clinics and Sloans-Kettering are also very reputable.
While my oncologist probably hasn’t had that many CC cases he does call and consult with other specialists, both in Colorado and at Mayo clinic. He has gone to bat for me with the insurance company and researches clinical trials on the internet. I have gotten information from this website on clinical trials and he has followed up on those as well. I think my doctor is very intuitive and has tried to introduce chemo to me as gradual as possible to maintain my quality of life.
If you would like me to conact my sister-in-law, the nurse in Jackson, about her opinion on what is the best place for cancer treatment there, I’d be happy to do that.
It is hardest when you’re first diagnosed and don’t have a plan yet.
-Caroline Stoufer, e-mail address: email@example.com, phone 970-325-4071
Sorry to hear you have CC. Dandkris is correct. Xeloda, while expensive, is cheap compared to Avastin which I will start on later this month. My oncologist told me that he was surprised that my insurance company approved Avastin as it costs tens of thousdands of dollars.
I have been on Xeloda since late June. It does cause some muscle aches for me, diarrhea sometimes, but mostly hand-foot syndrome where my feet swell up, get tender, and peel. I started on 3300 mg per day, but now I take 1650 daily. Usually I go for four days and have to stop for three days because of the hand-foot syndrome.
I have also had Gemzar infused, but my oncologist and I think the Xeloda is really the thing that is helping. My tumors in my liver have stabilized, although I do have cancer in my left hip bone now.
Good luck, Isaac. I have a blog which you can access from the general info page of this site.
Zemota is the drug that my oncologist said he wants to start me on soon. Thanks so much for your response and the miso soup tip. We are hoping to make some soon. We’re trying to go to as much of a plant-based diet as possible.
Hey y’all –
I did find out today that the cancer has metastisized to my left hip bone. I see a radiologist about radiation tomorrow. CLR, thanks for your info. My doctor says this is very treatable. Did you have to limit any of your activities and did you have much in the way of side effects from the radiation?
I have more info at my blog which is accessible from this site or you can go to http://www.carolinestoufercancer.blogspot.com. I will know more tomorrow when I see the radiologist.
I am on Gemzar and Xeloda and it seems to be working quite well, but I have a scan next week, so we’ll see.
I am approved to have Avastin added if necessary, so we may start that later, but in the mean time, the Xeloda seems to be working just fine. We don’t really think the Gemzar is doing that much, but since this combo seems to be working, we’re sticking with it.
I have to run. Gotta leave to go to chemo.
I have a friend with pancreatic cancer who has done really well with Tarceva. There was also another person in the discussion group on this website who said he’d used Tarceva as well. I don’t know the side effects, but there is a clinical trial for Avastin and Tarceva being offered at many sites in the US including the Mayo Clinics, but you can’t have been on chemo previously. You should be able to find the trial at clincaltrials.gov.
To CLR & Jeff – Thanks to both of you for your stories. You give us all hope!
Dear CLR –
I have a pain in my left hip that the doctor thinks could be bursitis, but I’m having scans on November 1st (CT and bone) to make sure the cancer hasn’t spread to the bone on that side. Where was your cancer in your left hip? Had it metastisized from the cholangio? My oncologist said that CC doesn’t usually go to the bone, but we’re scanning to make sure.
-Caroline Stoufer, Ouray, CO
Have you been taking aspirin or Ibuprofen? My doctor has cautioned me that these can affect platelets, especially aspirin.
I have been on gemcitabine and capecitabine (Xeloda) and it is working well for me. I have had a couple of weeks with low platelets, but last week they were above normal for some amazing reason.
I know this sounds silly, but I talk to my body. I told my platelets to get back up there. Now I’m working on my red blood cells.
My very best wishes for you,
I also sent you a reply about Xeloda (capecitabine) which if you go to the top of this page and click on “Experiences” just before the phrase “Mets to lungs and lymph nodes” you’ll find.
I would ditto the above on TFord’s comments on Xeloda. The diarrhea has been pretty mild and Immodium helps. Hand-foot has been more of an issue, but if you’re fathter isn’t on his feet alot and he uses the “bag balm”, it’s not too much of a problem either. The Xeloda seems to really be working for me right now.
Check out my other post to you. Also, last night I found at clinicaltrials.gov that there is an Avastin/Tarceva trial in Denmark that just opened. I have already been approved for Avastin and could probably get Tarceva in the US without any problem. I am still interested in the AZD2171 trials in England if you have any contact info on those.
Thinking of you and your father and sending best wishes-
I am on Xeloda (capecitabine) and I have had some diarrhea with it. I have taken Immodium which helps. Also, I’ve read that eating less fiber helps (doing just the opposite of what we normally try to do). My bigger issue with Xeloda is hand-food syndrome which causes my feet to swell and then become painful to walk on. I probably am prone to this as a bookstore owner and sometimes being on my feet from 9am – 10pm. I try not to schedule myself for long days, or try to sit at the counter for part of the day if I do.
My platelets have been low as well as my red blood cells. I’ve read and been told that you can’t really do anything to your diet to help your platelets, so I’ve been talking to them – I told them to get back up there. And today they were up again in the normal range; the last two weeks they were around 75. My oncologist says that aspirin is deadly on platelets and ibuprofen is to some degree, but Tylenol is hard on the liver. So I take Ibuprofen and Tylenol sparingly. This week I got a shot of Araness (sp?) for the first time to help with the red blood cells. I’ve started eating more beef which may also help.
Now I have a question for you. Do you know how to contact the facility in England that is offereing the AZD2171 trial? None of the trials in the US for AZD2171 seem to apply to CC patients, but I think the one in England would (plus I think they’ve opened a ssecond one). The only contact given on clinicaltrials.gov was to send an e-mail to the AstraZeneca website. I have a cousin who is a drug rep for AstraZeneca and she got me the name of someone at MD Anderson and I left a message there today, but I think I’m going to get lost in the shuffle there.
If by some chance, I should get to England for this trial, I want to look you and Patricia up, and possibly Mary, too, whose mother had CC and I think might have passed away by now. Has anyone heard from her?
Glad to hear your trip went well. Was this the trip to Florida? If so, hope you missed the hurricane.
Best wishes to you and your father,
Thank you so much. Stories like this keep me going! Especially since I am on Gemzar and Xeloda myself which are showing some results.
Is there anything else your father is doing that you think is helping? It sounds like he has a good attitude which is half the battle in my opinion.
Thanks again. Stories like this give me lots of hope.
PS I have a friend with pancreatic cancer who is doing well with Tarceva.