new member ,chemo question
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Re: Constipation – My formula, which has worked out well for me, is Senna-S (laxative and stool softener) 2 pills in the AM and 2 in the PM as well as 5 prunes in the morning.
If you don’t have a bowel movement after two days, go for something stronger – suppository or an enema if you really need it – before things get too bad and painful.
Michelle….your experience seems real similar to our JeffG’s in fact, he speaks of bone mets and mets to lungs and of course, the constipation accompanying the pain meds taken. Our Jeff is a great advocate for stool softeners and laxatives and has shared his experience with us many times. You might want to read up on some of his posts as there may be more information pertaining to you in particular. Your very positive response to the Gemzar resulting in a significant drop in the tumor markers and in the reduction of your fluid is nothing but remarkeable. I am overjoyed with your results. I wish for the trend to continue and thank you for sharing your story. Much love coming your way. Please, continue to share with us your knowledge and continue to kick this cancer in the butt.
Tons of good wishes coming your way,
MarionI was diagnosed December 2008 with stage 4 cc that was non-operable. I had metastisis to my spine and liver with fluid in my lungs and pelvis. I had 3 weeks of radiation on my spine. It was called pallitive since it was causing me pain. I have a bone scan next week to see if there is any other bone metastatsis.
I started chemo in January (gemzar). I have had 10 rounds so far. I had problems with blood counts so they decreased the dose to 1250ml with 2 weeks on and one week off.
The last PET scan in March showed the fluid in my lungs and pelvis gone. It also showed the spot in my liver gone. My CA19-9 went from 7998 to 526 between December and March. I also had an ERCP in February to replace my stents. At that time the doctors said that the tumors in my bile duct and hepatic duct was significantly improved. My doctor said that I will be on chemotherapy until my body can’t tolerate it anymore.
Talk to your doctor about the constipation. I was on narcotic pain medicine from November until mid March and had terrible constipation. They had me take Senecot-S which you can get over the counter. It has a stool softner and laxative. The doctor also prescribed Enulose.
Good luck.
Michellesaracita wrote:Jamie D,Could you give us information about where you have been treated? It sounds like you have received excellent care! I am very encouraged by your story, as I’m sure many other are. Thanks for posting about your experiences!
-Sarah
Hi Sarah;
I go to the Mayo in Minnesota. I have been pretty happy with them although I did change Oncologists after a couple of months there and had a different surgeon when I had my resection in June. The previous October I had an open and close surgery and was not very happy with that surgeon. I think that it is important that you have a good relationship with your doctor and you feel they are doing everything they can for you. I believe that we have to be our own advocates at times, especially with cc. I did not find that they addressed the importance of nutrition or boosting my immune system at all. I think that this site is a wealth of information for us. If there is anything else I can do for you or that you’d like to know just let me know.
God Bless,
JamieJamie D,
Could you give us information about where you have been treated? It sounds like you have received excellent care! I am very encouraged by your story, as I’m sure many other are. Thanks for posting about your experiences!
-Sarah
Deborah;
Welcome to our group. I was diagnosed in Oct 07 with Stage 4 inoperable cc. I started Gemzar/Xeloda in Nov and had 7 months of it. 3 weeks on 1 week off. At that point my main problem was my white cell count kept going lower and wasn’t coming back up. I ended up having a resection in June 08 so I went off chemo. The tumor had shrunk from 15cm to less than 5 and lymph nodes didnt light up on PET scan. Tried doing more chemo after surgery but wasnt able to tolerate it because of blood counts again and Dr didnt think it was useful. My understanding is that if I need to go back on again they can adjust the chemo to a lower level to see if I could tolerate it. So I think that as long as your husband is doing OK on it they can continue and if he has problems they can adjust dosage as needed. Hopefully he gets great results when he gets his scan in May. One thing I think is important is to try and keep his nutrition and immune system working as well as possible. I think that helped me tolerate the chemo better. I gained back the 20lbs I had lost before I was diagnosed while I was on the chemo. Keep us updated and I’ll pray for good results next month.
JamieDeborah, it sounds like the chemo went well and your husband is lucky to have such a wonderful caregiver. My husband has basically given up meat, dairy, sugar and processed food and that has helped with his constipation (he adopted that diet as it’s supposed to be good for minimizing tumor growth)
Keep us updated!
Deborah…Glad to hear that you have researched your options. You might also want to use the “search function” in re: to constipation. We have had many discussions explaining the benefits of stool softeners and other remedies in order to combat this frequent side effect. Others may be able to send some suggestions your way also.
Tons of good wishes coming your way,
MarionDeborah,
I also am glad that you have found this site but sorry for the reasons that have brought you here. The help and support here is awesome. You are in good hands. I will be hoping for the best on the results of his scans.
Darla
Thank you for your response .Yes we are dealing with Dr that have had experince with this cancer and we also travelled to the U.K.(we live in the West Indies)to the London Royal Marsden Hospital for 2nd & 3rd opinions.My husband was diagnosed with inoperable stage 4 CC.The cancer had also spread and is now in his spine and lymph nodes.The DRs in London were in contact with the Drs here and agreed on the chemo treatment plan and scans at 3 months showed some shrinkage in the tumours on the liver .The tumour on one lobe (intraheptic I believe)is very large with smaller ones on the other lobe.The chemo has made a big difference so far , my husband says he feels so much better, and he has been lucky and had few side effects (except constipation) .he also has no pain and overall seems to tolerate the chemo well.Basically he still is way to exhusted to do anything or go anywhere but he is strong in spirits and will and Im learning to take one day at a time .I thank you all so much for your fellowship and support and will let you all know how his scan results come out.once again thanks a million .Deborah
Hi Deborah,
Welcome to the website – my husband was diagnosed with CC (non resectable Klatskin) in Jan 2009. He just finished radiation and is about to begin chemo, the same protocol as your husband’s, i.e. gemzar/xeloda. I agree with Marion, the word palliative is often applied pretty broadly and hope/attitude do go a long way with this horrible disease. So many people live far beyond the grim prognosis they receive from their physicians.How did your husband tolerate the chemo?
We are thinking about you and hoping that the scan brings good news.
Danielle
Hello new member and welcome to our site. I assume that the opinions gathered by you have been with physicians and centers familiar with this cancer as this cancer is considered to be rare and only a few select physicians have treated multiple Cholangiocarcinoma patients.
On this board we have seen many being treated with Gemzar/Xeloda over many months and even years. You will have much more information about the efficacy of these drugs once the upcoming scan has been evaluated. At times, another combination will be recommended but, it seems to be so very individual varying from person to person. Depending on the location and size of tumor many have been able to follow up with radiation.
It had been explained to me that the term:I am a new member, my husband was diagnosed with CC in october 2008.We went through the usual rounds of getting 2nd opinions etc but they can only offer pallitive treatment of chemo combo of Gemzar & Xeloda for a period of 6 months.We are now reaching the endof the 6 month and he will be having a Cat scan early May to determind if it worth continuing the chemo. If the tumours are shrinking the Dr says he will be given the chemo untill “his body cant tolerate it any more “.Has anybody out there been in this position and can tell me how long somebody can tolerate this chemo wothout a break????also must say that this site has been a God send ,just knowing others out there are going through the same hell.
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