Topic: Side Effects of Gem/Cis

I'm just wondering if anyone has had the side effects I've had with Gem/cis.  I've had 6 treatments then took a three week break and went to Florida.  I have my 7th treatment tomorrow.  Florida trip was very difficult for me.  It was cold in Florida and my stomach swelled so bad that I practically stopped eating for comfort.  I was drained five days before I left for Florida but the fluid came back quickly.  I got drained again yesterday, 1/28 and the doctor is planning on putting a drain in where I can drain myself as the fluid builds up.  That should be planned within the next two weeks. 

I've discovered that air travel is not good for me - maybe travel at all is out.  That's a bit depressing but at least I tried it.

My biggest side effect is the swelling of my feet and legs.  My legs swell all the way up to my thighs.  The swelling is so bad that clothes don't fit me.  My legs are so tight I can barely bend at the knees.  I am doing lymphedema therapy and they're talking about wrapping my legs to help with the swelling.   I go for that appt tomorrow prior to my chemo treatment. 

The good news is that my CT scan on 1/7 showed 10% shrinkage of my tumors so I guess the Gem/Cis is working.  But yesterday I had blood work before the stomach drainage and some of my liver levels went up so I'm worried about that.  My bilirubin is still within normal range but it went from 0.4 to 0.6.  Makes me think the tumors are growing.  Also, my alkaline phosphatase went from the 400's to the 800's so that's scary.  I have a metal stent in the bile duct in my
liver since May 2013 and so far it has worked great. 

Just wondering if anyone else has the feet/leg swelling issue with this chemo?  And also if fluid build up in the stomach is worse because of the chemo or totally from my disease?  I'm getting tired of treatment and am starting to think about stopping everything and see what happens.  I had hoped the trip to Florida would have strengthened me but it actually exhausted me.

Any advice would be appreciated.  Also, if anyone has the drain for fluid and can tell me how they handle it, I would appreciate it.

Peace to all.

Love & Hugs,
Mary

Re: Side Effects of Gem/Cis

Dear Mary, I am so sorry you are having such a rough time right now and the only thing I can suggest is to tell it all to your ONC as maybe some changes are needed. I can relate even though I do not have CC the UC is driving me nuts and the Remicade is tough and there are times I want to throw in the towel. But when I think of the alternative its not welcome either. I think its a good sign that you had shrinkage and gosh I did not know there was a drain that you could drain the fluid yourself. I had been crying a lot and now some new thing has popped up and my GI put me on 10mg of Lexapro (mild antidepressant) never been on one and it has really helped in coping with my situation so you might want to think of something like that. Sometimes we just need a little extra help. Wish I could wave a magic wand for you and wish it all away!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Side Effects of Gem/Cis

Mary, I'm sorry you are having a rough time with the gem/cis too. I wish I had some advice, but I haven't had the reaction yo it that you have. Just sending you a virtual hug. Sometimes, that's all I've got.

Impatient patient.

4 (edited by PCL1029 Tue, 28 Jan 2014 18:51:35)

Re: Side Effects of Gem/Cis

Hi, Mary,
sorry to hear about the side effects;you have go thru a lot in the past 22 months;as a patient myself, I know how you feel;indeed ,for myself, my CCA journey is like a tiny wooden sail boat going nowhere in the middle  of the ocean.
Do I have advise for you,my friend? the answer is NO because I really do not know about the answer even most of you think I can.
Do I want to give you hope? the answer is YES.
Do I want to give up the fight when it seems there is no hope? the answer is many times.
What I want to do is to give you a hug and pray for the Holy spirit to guide you in the best way that will help you both mentally and physically exactly like when I need it the most.
From one patient  friend to another

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Side Effects of Gem/Cis

Thank you all for the kind words.

Percy,  I think my faith has gotten me this far and am hoping it will continue to do so.  It is a difficult journey we all have with this disease.  I applaud you for your courage and determination to go on in the face of all the obstacles you, and all of us, encounter with this disease. 

Was just hoping someone could tell me about this drain they put in for the fluid so that I can release it at home on my own.  The doctor has explained it to me but I like hearing from someone who has actually had it and knows the reality of it.

God Bless everyone.

Love & Hugs,
Mary

Re: Side Effects of Gem/Cis

Mary....biliary drainage had been discussed a few days ago. I hope this link will be of help to you:
http://www.cholangiocarcinoma.org/punbb … 475#p84475
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Side Effects of Gem/Cis

Hi Mary,

My Dad is going through gem/cit right now and the swelling in his legs is awful! He's developed an infection in his right leg, he's on antibiotics now. He wasn't able to go back to chemo once they realized he had the infection but hopefully he'll be back in there by the end of February.

He's had some response to the chemo as well, ca19-9 were at 8100 (early dec) and now down to 4000 as of his last blood work. I think he was about 4
Treatments in. We don't go for imaging for another month or two, but we are hoping the cancer is shrinking.

Re: Side Effects of Gem/Cis

Thanks Ahottie and Marion.

Marion. This is a different procedure I'm talking about.   This is a drain for the fluid in the abdomen not a biliary drain.  I have a metal stent in the bile duct in my liver but that's completely internal.  This drain I'm going to be getting is something I can drain myself when the fluid in my abdomen builds up too much.  It's under the skin but the tubing is coiled up outside and I just uncoil it and open it to release the fluid.

Mary

Re: Side Effects of Gem/Cis

Hi, Mary,

May be the link below will help. Carefusion is a big company to make TPN and other products for the hospitals.

http://www.carefusion.com/medical-produ … drain.aspx

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Side Effects of Gem/Cis

Mary.....I believe that you are talking about a  Percutaneous Drainage Catheter placed by an Interventional Radiologist.  I recall a few years ago a person touched on this very lightly, but we have not had any recent reports on it.  Hopefully someone will chime in and share thoughts on this.
I so much hope for you to get some relief, dear Mary.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Side Effects of Gem/Cis

Hi Mary,

I so wish I had an answer for your question.  Like LisaS, all I've got is a virtual hug.  I'm also sorry to hear about your Florida trip.  How did your treatment go today?

My mom has an acupuncturist in Warren, NJ (very close to Basking Ridge) whom she likes a lot, whom I also highly recommended (I have chronic shoulder pains from my work of sitting in front of the computer all day, and after a week of treatment from him while I was in NJ, I've been feeling much better).  Email me through the forum if you're interested.  I could give him a call and see if he thinks acupuncture could help with the swelling.

Sending you positive thoughts for relief,
Caroline

Re: Side Effects of Gem/Cis

Thanks everyone,

Caroline,  thanks for the info on the acupuncturist.   There is one at Memorial Sloan Kettering that I can use and my insurance will pay for so I'm ok there.

Marion,  that may be it.  I found out out yesterday that it's called a tenckhoff catheter and an IR does put it in. 

Marion & Percy, I also found out yesterday that my oncologist met with Stacie Lindsey (sp?) last week and she is going to attend a foundation conference in Salt Lake City, Utah end of February.  She was telling me about it yesterday because she knows I use the website and have found it so helpful.

Peace, Love & Hug,
Mary

Re: Side Effects of Gem/Cis

Mary,
Your post was so helpful to me. My only treatment for the advanced CC right now would be gemsitabine alone because the Doc thought the Gem/cis would be too strong, as your note seems to verify.  Also, I decided against going to Florida for a while, and your experience told me I made a wise choice.
You have had a rough time, but I  appreciate your sharing your life with us.  People say to never give up hope, and I agree! Praying for you.

Re: Side Effects of Gem/Cis

Mary....so sorry for not responding earlier.  Had it not been for codfish posting a message to you, I may have overlooked your posting.
Correct, Stacie had met with the hepatobiliary team in anticipation of our first Stakeholder meeting at the end of this month. 
This meeting is chaired by Dr. Abou-Alfa and he will be accompanied by other physicians within his working group including; your treating oncologist.  We are very excited about this conference as it brings together about 50 physicians (many of which are mentioned by members of this board) and numerous others focused on the disease of Cholangiocarcinoma.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Side Effects of Gem/Cis

Mary,
You are always in my prayers. You are one tough cookie!
Love
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Side Effects of Gem/Cis

Hi Mary,

Your experience sounds familiar although not truly alike, my mom had the same drain you were talking about inserted into her abdomen a few months ago. Initially, my mom was on gemcitabine/cisplatin and it worked wonders for her. She did no experience any swelling of the feet/ankles nor did she have fluid in her abdomen as a result of the treatment. She developed the fluid about four months after stopping gem/cis. Having said that, she was having the same problems as you regarding the swelling and after being drained by needle the doctor recommended they place the drain to provide her with additional comfort. The procedure itself was very quick, and my mom had minimal pain once it was complete. She was able to go home about an hour or so after its insertion. It was a very simple solution to the problem, was not messy and very easy to use. In Canada, we are provided with palliative nurses that come to your home and remove the excess fluid as often as you need it done. My mom was doing it once or twice a week and then later moved to every other day. It definitley helped alleviate her uncomfort but it also decreased her blood pressure in several cases (if it is drained too often etc). You have to remember to drink lots of fluid to help replenish yourself after having the fluid drained. My mom was also seeing a naturopath at that time and I know her recommendations helped a lot as well (unfortunatley my mother was at the end of her journey, I truly believe had we started earlier her fate would've been different). Nevertheless, I think it is a valuable tool to have to deal with this symptom, it is not permanent and can be removed should that be the case (god willing). Please feel free to contact me should you have any additional questions.

P.S - showering is a bit tricky as you are not supposed to wet the area. The palliative nurses provided my mom with a waterproof tape which they placed over the drain to protect it (so she wouldn't get it caught on anything etc) and then I would place saran wrap over the area and tape it again when she showered and then I would take it off once she was done.