I wanted to second what Ron wrote. My mom was received Gemcitabine/Cisplatin for about 6 weeks and experienced continuous pain in her side and rib area during treatment and for months after. We were told that there is always a possibility that the shots they give you to boost your bone marrow can create bone spurts; thus, pain appears suddenly.
When that logic didn’t apply to her pain any longer, we felt convinced it was mets to her bones. Lo and behold, a bone scan showed some small fractures in her ribs (she has osteoporosis) that were NOT caused by mets. And she also experienced back pain that eventually subsided.
I hope some of this can ease your mind until you know for sure.
Abigail
My mom was on Xeloda, Gemcitabine and Cisplatin (though not at the same time!) and experienced this with each regimen.
It helped to wear thickly padded socks or slippers when she walked. Her feet looked swollen and red, as well, which were side effects of the treatment for her. Basically, we had to wait it out, as it got better a few days after her chemo was administered. If it becomes unbearable and does not improve, you could always discuss reducing the dosage to make it more tolerable.
I know this is not great advice…I hope she feels better soon!
Abigail
My sister has just recently been diagnosed with cholangiocarcinoma. As you can imagine we are all completely devastated by this news. She is in her early forties and has two young children. She has been informed that surgery is not an option as it has spread to the nearby lymph nodes although there is no evidence to suggest it has spread further than this. She is due to start chemo with Cisplatin and Gemcitabine very soon. Iam desperately searching for anything postive on this treatment. She has everything to live for and we simply don’t want to be without her. Any positive news from anybody would be welcomed.
Thank you to you all.
Dear Joyce and Jeff,
Thank you so much for your kind massages, I cannot tell you how much it means that complete strangers care enough to offer comfort. My husband has a CT scan on Friday this week and we will see the consultant on Tuesday to discuss the results. We will keep an open mind and I will also bear in mind your experiences. The consultant is great he is letting my husband make up his own mind and not pushing chemo at the moment, but if he does suggest it might be a good thing, we will be guided by him. I think he said he would start on Gemcitabine first as this is best tolerated but if that didnt work he may add oxiplatin or cisplatin. I asked Ray if he wanted to do anything while he was still well and he said that he had done everything he wanted to do, just would have liked to do more of the same. He has three beautiful daughters and thre lovely grandchildern so he says he has left his legacy to the world!
Many thanks
Sue
She is doing much better. It has taken her about a month to feel more back to normal since her last chemo treatment. She actually is on vacation in Montreal for an entire month which is a tiny victory for her (she’s an avid traveler). She’s close to your mother in law’s age; will be turning 61 in January.
She was on Xeloda for six weeks earlier this summer and took a six week break. She began a 7 week cycle of Gemcitabine/Cisplatin, which ended in late September. That is an incredibly taxing regimen but her scan showed marked improvement…no visible cancer in her lymph nodes, with an 8 mm. “fuzzy area” on her lungs. She is having a follow-up scan to check on that at the end of this month, as it could just be inflammation.
Basically, chemo was the right choice for her, as her tumors significantly shrunk. It’s definitely not an easy choice to make but it has worked thus far. Just wanted you to know we were given a VERY bleak outlook and (knock on wood) she has come a long way since then. Always have hope!
Abigail
Hello Everyone,
I haven’t written in awhile. My Mom (Stage IV exterhepatic..mets to liver and lungs..03/2006…four metal stents in common bile duct) has been fighting this cancer like a true champion. For the most part, she has done very well. It wasn’t until the end of sept. that things changed pretty fast and not for the good. That’s when we found out the Xeloda she was on did not work….but also her cancer spread to her right pelvic bone. She had two weeks of radiation to her pelvic bone. In the meantime, her symptoms worsened. She started having severe right side/chest pains. Her lungs were filling with fluid. She had a procedure to drain the fluid. They did this in two spots in her back. Thankfully, the fluid came back negative for cancer. It was the biliary system producing excess liquid. The procedure helped her breathe a little better, however she is on oxgyen as needed. She uses it at night and sometimes during the day. That procedure happened on a Tuesday, the next day she had another procedure to drain her bile externally…for they could not put another internal stent in. This is when we discovered that her biliary system was the worse the doctors at University Hospitals in Cleveland have ever seen. Side note…they have been amazing caring for my Mom and our family!! They are fighting just as hard as she is!
She has an externally drainage bag that is draining her bile. She is also on oxycotin, percocet, cirpo, ursodyiol (sp), along with some other meds to help.
Her doctors informed us that her cancer has reached a new stage…one of rapid growth! Since, having her bile drain externally they were able to give her gemcitabine with a little cisplatin. She has been on this before and it worked. So we are hoping and praying to God that it will work this time as well. Her doctor doesn’t want to put her on something new b/c her body wouldn’t be able to handle the side effects…plus her bili is still pretty high.
Next week they are planning on doing another procedure to hopefully drain the bile internally as well as externally. She went for some pics this week and we found out that her biliary system is decompressing..so hopefully with the chemo and time the dr. will be able to bypass the bile to her bowel.
I’m sorry I talked for so long. It has been a hard couple of months. My Mom just turned 54. I am 29. My brother is 25. My husband and I just had our 2 wedding anniversary. More importantly, we have a 7 month old daughter named Lily. She is the first grandchild on both sides. AKA…my Mom’s best medicine and sunshine on her toughest days!!! A TRUE GIFT FROM GOD!!!!
My Mom, Patricia, has never complained or asked why. She takes everyday as a gift and loves God and her family so much!! She has and will always be my inspiration for everything I do in life…and I get to call her MOM!!
Thank you everyone for listening to me…I hope I can help one if not more people with this cancer.
Love and Happiness to all…Alison
nancy,
that is great to hear that you found a surgeon who was willing to help – I have always said to people keep going until you find a surgeon who will operate. We consulted with yuman fong at sloan kettering – he was willing to operate on my dad although he said that he knew an excellent surgeon here in the UK – as it happened we went to the surgeon (peter lodge) here and he was brillliant. My dad’s cancer did return but i think that was because it was at a very late stage. the surgery did help in that my dad never experienced pain throughout his illness and i think that this was because the huge tumor in his liver was removed.
I understand your concerns re chemo – I had always though that it was better to go for a combination chemo, my dad had gemcitabine and carboplatin which was effective however it was very harsh – it hammered his bone marrow, his platelets and hb levels never really recovered and this caused alot of problems for us to manage. It is so hard to make these decisons though, as some patients can cope with platinum drugs (cisplatin, carboplatin and oxylplatin) very well. It really is an individual thing.
after my dad’s surgery we were told that chemo was unproven in terms of benefits and with that we should wait – if the cancer reared its ugly head we might want to think about it later on… in hindsight I wish my dad had adjuvant chemo as it might have just killed off those stray cancer cells before they had chance to establish themselves. I also wish that he had been given radiation. I wish we had slung everything at it and not just gone for the ‘wait and see’ option…I think that you will find that alot of people whose cancer did return after resection might say the same.
But then you have the decision of which drug(s) to go for – when it comes to answering this question I would start with the excellent chemo worksheets on this website (I think they are still there) print it off, take it to the onc meetings and also do some research on current trials and ask your onc about promising early results, an experimental treatment maybe a better option..
wishing your friend a speedy recovery from the surgery and all the best for the future,
jules
Oh charlene, how I feel for you. I totally understand your anxiety and your fears. I wish I could be there right now, I would give you a big hug. We are here for you. Just come here and vent, we all understand.
You need to keep strong and armed with information to fight this beast, you will find strength you never knew you had.
My Dad had a couple of courses of Gemcitabine and carboplatin. Carboplatin is less harsh then cisplatin and just as effective. These drugs are platinum based chemos, cisplatin is 1st generation, carboplatin 2nd generation and oxylplatin is 3rd generation – 3rd generation being newer, and I think it is correct to say superior. All these platinum chemos hammer the bone marrow and can effect platelet and heamoglobin levels. Chemo is cumulative, it is not really possible to predict how many courses your husband may be able to tolerate/need and side effects/responses vary. It really is an individual thing. One thing is certain – combination chemo such as this one is more effective then gemcitabine alone (I can refer to data released from the abc 02 trial here in the UK to support this).
I trust that your husband has been surgically assessed, have you sought more then 2 or 3 surgical opinions? – there are surgeons out there who do take on ‘hopeless’ cases. (As in my Dad’s case – his resection certainly bought us more time and can be curative if good margins are acheived). Get your husbands scans on disc and fire them off to some of the best people for an opinion.
It sounds as though your husband has lymph node involvement and this could be why surgery has not been considered an option. However, I have read articles that state that lymph node involvement should not rule out a resection as a resection can also be carried out for palliative reasons.
Charlene, hang on in there. Alot of people have very positive responses to chemo and maintain a good quality of life. (See Caroline Stoufer’s blog on this site – a perfect example). Please keep in touch and remember that we are here for you.
take care, Jules
Hi All,My Darling Sister Gail is now about 3 months post Op. She has remaining lesions in her abdomen, lymph nodes and maybe liver. Over the last few weeks she has been experiencing what she describes as sharp contractions of her abdomen which are really knocking her for six. Has anyone experienced anything like this? On a positive note she is feeling okay otherwise, though tired, and has started Chemo last week. She is on the ABC02 trial though has been asigned to Gemcitabine only. A mixed blessing really after I read here that the Cisplatin element of the combined treatment is not well tolerated – I think she would have given up if the side effects were severe. At present she has had very few side effects from the Gemcitabine apart from being tired. Much Love to all. Chris XX
My mom is also on Cisplatin and Gemcitabine. After almost two months of this combination, we’re very close to throwing in the towel with this particular regimen. I think those stomach pains you described are very indicative of what cisplatin can do to one’s digestive system. They say the first cells to be killed off during chemo are the ones that line your stomach and that can wreak havoc. My mom’s lost so much weight and even eating something like a banana can make her stomach hurt. Her oncologist’s suggestion is to eat less fruit. Sounds crazy but I suppose it can aggravate stomach problems somehow.
And as far as the lack of optimism goes…I think cisplatin definitely induces depression, no matter how strong-willed someone can be. The break will absolutely do him some good, even if it’s for a short time. My mom is taking a two-week break and we could not be more relieved for this short “recess”.
I read in a NY Times article that cisplatin has been known to literally melt away tumors. Okay, so maybe that was based off of testicular tumors but so what…it was an encouraging phrase that I remind myself of when I wonder if cisplatin was the right decision…
All the best,
Abigail
Hi Abiail, Sorry to hear about your Mum’s troubles but they do sound pretty standard to the chemotherapy world. To answer some of your questions…. Yes it is normal for the hair to start falling out within a week. Gemcitabine and cisplatin is known for hair loss for alot of people. I had a thining out but did not loose all. Yes it is definitely the right thing to do with stopping or not giving chemo when blood counts are to low. I have had to delay a week a couple times two weeks because of low counts. I highly recommend having blood checked weekly while on chemo. Yes I have had to get rehydrated several times and have had to give my self injections of filgrastin due to being nuetropenic ( low white bloods cells in your bone marrow). Plus you need to keep an eye on your platelets as they can go low and danger of not being able to control your bleeding should you get cut or bruise real bad. Xeloda is a form of chemo but normally taking orally. Your oncologist should know exactlly what your taking and when. Especially if starting a new chemo regimen. To much toxicity from these drugs can cause alot of problems. CT Scans are recommend every 2-3 months to see if tumors are shrinking. Just because your CA 19 marker is showing good signs of going lower doesn’t always mean the tumor is shrinking as well that may come a little later or prove not to work. Get yourself a little calendar that has room for notes and carry with you just in case there is questions of when and what. I hope I’ve answered your questions. And I wish your Mom and you the best on this unfortunate roller coaster ride.
God Bless,
Jeff G.
Hi everyone,
My mom has encountered so many problems with her new round of chemo and so I’m turning to you guys for some advice. She had a first round of Xeloda for six weeks, Monday-Friday, and tolerated it very well. Her oncologist’s nurse said she could discontinue Xeloda since her radiation therapy ended. Three weeks ago she started gemcitabine (once a week for three weeks, one off) and cisplatin once every 3 weeks.
She had the port put in on Monday and came in for gemcitabine and cisplatin today. Much to our surprise, her blood tests showed that her blood cell counts were too low to get her treatment. Instead, she will receive some shots tomorrow and the day after to boost her cell count. We’re bummed (to say the least) but at the same time we’re wondering if she should go back on Xeloda, which did reduce her CA-19 marker significantly. Before she started this new chemo, her doctor did say she could have stayed on Xeloda.
Have any of you heard of skipping a treatment for this reason? Did any of you take any alternative immune boosters during chemo? That’s something else we’ve considered but there’s just so much out there that claims to “work”. And finally, her hair has just been falling out in clumps…although we’re not worried about the whole vanity aspect, I was wondering whether after just two treatments if that was a little early to be losing so much hair?
Sorry for all the questions…just so much to think about.
Abigail
Researching more on chronotherapy, here’s a link to a mice study using Gemcitabine and Cisplatin,
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Display&DB=pubmed — this is not displaying the address correctly– after the word “query” it should read “.fcgi?CMD=Display&DB=pubmed” — so try cutting and pasting the url together.
These are the chemo drugs I am using at this time.
A related idea is having fixed-rate dose of chemo — which could be getting chemo over a longer period of time or having an infusion pump so that they try to keep a constant level of chemo in your body. http://www.biomedcentral.com/1471-2407/5/61
G
My Husband has been on Tarceva for two months. Has had no new side effects.
He had 40 treatments of xl119 /5FU study first and was pretty exhausted going
into Tarceva. He had a CT scan today but we will not get the results until 11/22.
He was diganosed 10/10/05 with Cholangiocarcinoma Bile duct that spread to liver and then spread to the Lung in July 06 so had to come off the Clinical Study He had
5 to 10% shrinkage in May on the xl119 5FU but then found out it had spread to the lung in July o6.
We had a choice of Tarceva or Cisplatin and Gemcitabine, hoping for less
side effects we went with the Tarceva.
cps
chemo options in the uk are limited. Most oncologists here regard cc as a rare cancer and consider that chemo is ineffective – they will refer to the lack of clinical trial data.
We have seen a few oncs in the uk (my dad has cc) Prof Cunningham at the Marsden specialises in gastrointestinal cancers. You may want to consider a clinical trial – the ABC 02 trial offers gemcitabine OR gemcitabine and cisplatin, I believe they have about a 25% success rate (shrinkage of tumor and prolonging life expectancy). There is also the gemcap trial (gemcitabine and capcitabine) – I do not have any knowledge of outcomes here, there is also the XL119 trial in Leicester..
my Dad had gemcitabine and carboplatin (which is better tolerated the cisplatin) off trial which kept his disease stable however he was quite fatigued during the treatment. It also hammered his bone marrow and because his platelet levels dropped so much he is no longer able to have chemo, however he has changed his diet radically and his disease remains stable and he has a very good quality of life. I don’t want to put you off chemo – what works for one does not neccessary work for another – one thing that I have learnt since my Dad was diagnosed is to ignore gloomy statistics, patients are individuals and what works for one may not work for another.