Topic: Question for folks who have done Gem/Cis

Hi y'all.  My husband's lymph node biopsy results came back yesterday - nothing but necrotic debris.  The oncology team feels 95% certain that his lymph nodes are cancerous.  We will try to confirm via PET scan.

This means he is no longer a candidate for Dr. Chapman's liver transplant protocol, so he will start palliative Gem/Cis as soon as possible.

My question for those who have been on it is, how did it affect your ability to carry out daily functions?  Were you still able to work, play, travel?

The reason I ask is that taking the kids to Mardi Gras in New Orleans is on his bucket list.  He is doing very well right now, still working and doing all of his normal activities.  If he starts chemo this week, Mardi Gras week will be one of his "off chemo" weeks, following his third round of treatment.  Will he be up for a 14-hour car trip (with overnight stop in the middle) and Mardi Gras fun?  (We have an electric scooter we can bring if needed.)  Or should we expect that the Gem/Cis will make him sick and weak and not able to travel?

Thanks.

Mary

Re: Question for folks who have done Gem/Cis

Mardi Gras is March 4, by the way.

Re: Question for folks who have done Gem/Cis

Hi,

it is difficult to say;I have not been on that GEM/CIS regimen. but if he can work full time ,I don't think it will be a problem. the key is how he will feel after the first cycle(21days) GEM/CIS treatment. I think that will be a good indicator for your answer.

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: Question for folks who have done Gem/Cis

Hi Mary,

I agree with Percy.  You will have a better idea of how the treatments will affect him after the first round.  Hope it all works out and you are able to achieve this goal. 

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Question for folks who have done Gem/Cis

Mary....Chemo has a cumulative effect.  If indeed your husband should experience major side effects early on then you might want to discuss with the physician the possibility of skipping a treatment prior to his trip.  I hope for those familiar with this chemo treatment to chime in on this conversation and share their thoughts as well.
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: Question for folks who have done Gem/Cis

Hi. I just finished my 7th cycle of gem cis. Of course we are all different and all respond differently. Some have lots of side effects some none some minimal. For me mine were minimal and main side effect was fatigue. I also felt pretty good the first couple of months when I started. It started to get more difficult as far as recovering time from chemo after about the 4th month. I began looking very forward to my week off from treatment. I hope all goes well and please keep us posted.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Question for folks who have done Gem/Cis

Hi Mary,

I agree with the others that there is a wide range of possible reactions.  I wrote up the experience my wife had, and I also included a few other gem/cis experiences here:

http://cholangiocarcinoma.wikia.com/wiki/GemCis

My wife's experience was that it was very tolerable, and we were able to do lots of travel etc (especially on the off week).  I think this is on the positive side of possibilities though.

Jason

Re: Question for folks who have done Gem/Cis

Mary, hopefully he will handle chemo well. I'm jealous that you are going for Mardi Gras!! The main thing to worry about there are all of the crowds. Most chemo patients have lower tolerance for illness. I'm sure the crowds haven't gotten any smaller since I lived there in early 90's!
I hope his docs will work with him so you can all go! It's lots of fun!! (I rode with the Krewe of Ullysses)

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Question for folks who have done Gem/Cis

My dad is going gem cis and has not had any side effects.  He actually says he feels better after chemo (because they give him steroids).  He has been on this regimen since May 2013 with no side effects.

Re: Question for folks who have done Gem/Cis

Hi Mary,

My daughter, Lauren, was on Gem/Cis for a long time. She felt very tired and achy a few hours after getting chemo. She would usually run a low grade fever. Not high enough to go to the ER. She would feel this way for a few days and then say she felt better than before having chemo. We found that taking nausea meds as directed around the clock for a few days helped. If Lauren didn't do this and got nauseous, she ended up vomiting even after taking meds. So I would suggest staying on top of those. Like everyone else has said, everyone reacts differently to chemo. For the most part, Lauren was able to do a lot after the first few days and never let it stop her from having fun and enjoying life. I hope your husband has a mild reaction. For that matter, no reaction would be even better! Take care, Mary and best wishes to your husband.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Question for folks who have done Gem/Cis

Dear Mary,

My daughter was on Gem/Cis for 4 months.  She definitely had side effects and symptoms for about 4 days following treatment, but felt much better on the off week.  She traveled several times during those weeks and each was a welcome break.

I hope you can all enjoy your trip,

January

Re: Question for folks who have done Gem/Cis

Hi Mary,

I just finished up six gem/cis treatments and then was scanned this past Tuesday, 1/7.  I'll get the results tomorrow, Friday, 1/10 and am hoping for good news.

I had major swelling of my feet and legs - all the way up to my thighs.  My stomach became very distended also.  Between the both issues, I was very, very uncomfortable.  I also had extreme fatigue but was able to deal with that.

Just today, 1/9 I went to see a physical therapist at Memorial Sloan regarding lymphedema therapy to help relieve the swelling in the feet and legs.  Today was the consult so no therapy was actually done.  But I was told that I am a candidate for leg wrapping which they do to help the lymphatic system drain and bring relief of the swelling.  I'm going to Florida 1/15 - 1/25 so they'll start that when I return. In the meantime the therapist gave me good advice on what to do while traveling.  I will see her again the day before I leave for Florida and she will show me some kind of massage I can to do for relief while I'm away and until I see her for the leg wrapping when I return the end of January.

So long story short...my two major issues with the gem/cis was feet and leg swelling, distended stomach and fatigue.  Oh and also my hemoglobin went very low a few times which required blood transfusions but did not stop me from getting the gem/cis.

Hope this helps and I hope your husband and the whole family enjoy your trip to Mardi Gras!!!

Peace,
Mary

Re: Question for folks who have done Gem/Cis

Hi Mary,

My mom tolerated Gem/Cis pretty well for the first three cycles (she had four total).  During the last cycle, she started experiencing much more pain and fatigue.  She experienced nausea once during that cycle.  She exercised almost every day during the treatment, and had it not for her ONC's concern for her catching something on a plane, she would have gone to visit LA on one of her off weeks.  I think the trip would have been good for her morale given that it would have happened right before she started experiencing some tough symptoms.

If this question had been posed for my mom at the time she was on Gem/Cis, I would have said, No way Jose Mom, you're listening to the ONC and not going anywhere!  But in hindsight, I would say, take a bucket of antibacterial wipes and sanitizers, go go go and have a great time!

Caroline

Re: Question for folks who have done Gem/Cis

Hi Mary (mcwgoat),

I've been thinking about you and wondering how you've been.  I'm sorry to hear Gem/Cis has been so rough.  I'm crossing my fingers & saying a prayer for good scan results!

Love,
Caroline

Re: Question for folks who have done Gem/Cis

Hi Caroline,

I received good news today regarding my CT scan and will post in the good news section of this website so as not to take away from Mary (who DAT) post here.

Thank you for thinking of me.

Peace,
Mary

Re: Question for folks who have done Gem/Cis

Mary -
My husband is in the middle of his last cycle of Gem/Ox and while not exactly the same drugs, similar in some ways. His first 6 or 7 treatments didn't really bother him much other then the cold sensitivity from the Oxaliplatin. Now that we are hearing the end, he is fatigued a lot and has trouble with his memory and such but other than constipation he is doing really well.
Our ONC gives him really good pre-meds (steroid, Zofran and Ativan) and then meds after to take - Zofran/steroid twice a day for two days and Compazine every 6 hours. We follow the after directions exactly as given and have only had one episode of nausea.
I would think traveling would be okay. I would make sure you stop every couple of hours to get out and stretch to keep the blood flowing in the legs. Alcohol hand wash is a must....use it often and liberally especially anywhere you are around a lot of people. Drink lots of fluids and have fun.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.