Topic: On to new stuff

Had a MRI and CT scan on Monday and the results came back. The liver tumor has continued to shrink (a little this time) from 7 x2.3 to 6.3 x2.3. All the bone Mets have stayed stable and there is nothing new!
I finished my 16 gem/cis two weeks ago and today he wanted to know what I wanted to do next. He said there is no absolutes about what to do, just different options. I chose to continue on with the Gemzar as a maintenance type program. His thinking and our thinking is that those 2 drugs were beneficial so why switch as long as we have success. All the research and info that everyone gave me is saved and if we need to change the Gemzar we have some plans.

Re: On to new stuff

Dear Cathy1024, Not a bad report, we love the words shrinkage and stable. What I have a hard time with is when a Doctor asks me what I think I would like to do or says what should we do? This is the point where I go for another opinion.
There are more options out there than before. I am wishing you more stable and shrinkage and please think about that 2nd opinion. While GEM/CIS seems to be the cocktail of choice,  I am glad that you have a list of options ready and waiting!

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: On to new stuff

Cathy....on this site, the word "stable" has taken on a new meaning.  Question: what other options for treatment have been recommended by your physician?
You might want to go from there and then consult with a center "very" familiar with this disease.
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: On to new stuff

Cathy,  Your status is similar to mine.  Finished 8 cycles of gem/cis with extremely good results but there is no next protocol.  I have decided as you have to continue with chemo.  I don't want to let C get the upper hand so have decided to keep pressing.

How are you doing with side effects of Cisplatin?  I have some fairly bad neuropathy so decided to go with Carboplatin for now.  I have no idea how this will turn out but start back tomorrow morning after a 6 week holiday.

Re: On to new stuff

Hi Cathy and Walt.
I had problems when my onc asked eat I wanted to do, also. I'm not the specialist, although I think many of us on this site are beginning to feel like specialists!!
I hope the chemo cutbacks and changes continue to keep cc at bay. Have either of you looked at any radiation options? Or clinical trials? The reason I ask this is that eventually (usually) the response starts to slow down and the toll it takes on the body can be hard to deal with.

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: On to new stuff

Thanks all for your words of encouragement and advice. I am at Siteman Cancer in St. Louis and they have treated many cases of CC. But that will not stop me from getting other opinions when needed. I have already been treated in Nashville at Sarah Cannon and have a doctor there.  When I said my doctor asked what I wanted to do it wasn't from him not knowing it was from him laying out what options are there and making it clear that currently there is no next that has been studied and recommended.
So what we focused on was that the Gem/Cis is currently causing my liver tumor to shrink and keeping other liver/bone/ or who knows what tumors to not grow. There is also not any research that says more chemo is better. We also discussed taking a chemo break (I have been on some type of chemo for 14 months). But talked about the real possibility that everything and more could quickly start growing back and be chemo resistant. We discussed other options like drug studies. But what made sense to me was to take a couple weeks and then just do a maintenance plan of Gemzar. Re scan in 8 weeks and see if it continues to shrink.
To all, I have a bunch of bone Mets and have had radiation 3 times for the most pesky ones on my spine and left humerus. I think they have said I have something on most vertebrae and left pelvis and my upper left arm and sternum. Because of how many they are and they are in bones there is a limiting factor on how I can be treated. So at least for now chemo seems to be the treatment. At some point they may just treat the liver using some other option.
Walt, I started last year on Carboplatin and then had The Cisplatin. The study drug I was on also caused neuropathy and I have had it pretty bad. Some difficulty with walking from pain not balance issues but shoes or socks have been a real issue. I have been on Neurontin, B6 and Cymbalta for the past year. When they added Cymbalta it was like nite and day..it made the feet stop hurting so bad that I had to soak them in water almost constantly. I haven't soaked them once since starting that.
Kris, I have already done one trial and am always on the lookout for trials that fit my circumstances. My feeling is it will be a trial that is the answer because for the most part they have proven what is out there now is only a temporary fix. So that is partially why I'm continuing with the Gemzar..it is currently working and that is a good thing.
Hugs to all
Cathy

Re: On to new stuff

Wow, Cathy, to use a cliche, what a winding road you've been on. It is frustrating that there is no set protocol and most treatments are a temporary fix as you said, but your relative success is really inspiring. Your logical and calm manner of thinking through things is really helpful. Very glad to hear you are stable. I can't give advice but your instinct to go back on chemo makes sense to me if the side effects are tolerable. 
We're waiting to hear if the Drs will rec chemo again for my sister. She couldn't tolerate the Gem-Cis due to low blood counts after only a couple treatments. Had radioembo w Y90 in Jan and is waiting for next suggestion/ plan.
Thanks again for sharing your situation and my best to you.
Willow

Willow

Re: On to new stuff

Back in August, 2012 I was diagnosed.  In Sept. I had the Y90 for the large tumor on the left side of my liver.  Then began chemo at the end of Sept. with gem/cist on the 21 day cycle.  The large tumor in the liver looks necrotic (sp?) and the mets to my nodes close by have remained stable.  The problem I am having is that by platelets keeping dropping really low - like 7 the last time - and the white and red cell counts are also low, but still acceptable.

My oncologist has suggested that I take a week extra off the chemo and has also dropped the amount given from the 100% of the "formula" down to 75%, and now down to 66%.  We'll see how my blood work responds to that.  I am scheduled for another round of scans at the end of May and will be able to tell if the regime is still successful.

Anyone have suggestions on food that's easy to eat and gives me back some appetite?  Also, anyone having problems with kidney pain?

Re: On to new stuff

Dear Kaklon, in answer to food, instead of trying to eat 3 meals a day try grazing all day in little bits. When my husband was in Home Hospice they suggested Carnation Instant breakfast. It can take the place of a meal and you can even have it for all 3 meals as its full of nutrients. His favorite was Vanilla with a banana blended in. But you can use any fruit. I found that comfort foods worked best, like home made soups, stewed chicken. Actually any chicken or fish. Beef is very hard on the system.
How do you know it is kidney pain and have you talked to the ONC about it, if not you should. Please keep us updated and let us know about the kidney pain!

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: On to new stuff

Hi,
If my calculation is correct, you have been on the GEm/Cis regimen for around
8-9 cycles. The pain of the kidney may be related to the toxicity of the cisplatin and you should talk to your oncologist about it.
Since I am also a patient of ICCA, I had been on Gemzar alone for 14 months and never had problem with the kidney; Cisplatin is well known for  its disease-related concerns such as renal impairment and  Gemzar is well known for its side effect of thrombocytopenia; your doctor has reduced your regimen dosage and it was the  same approach using by my oncologist when I had problems with my platelet counts during my 14 months of Gemzar treatment.
Hydration may help the kidney but make sure you mention your problem to the oncologist.
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: On to new stuff

Dear Cathy, you are really running all around the track. What a warrior you are. In fact let's give you a Super Hero! The only thing I can say is really a question, I guess. You say you are leery to go off Chemo for a bit for fear of the Cancer growing, but I have  heard that Cancer keeps cookin a while like radiation does. Is this not true? I sure hope so as you deserve a little break. Keep your great attitude going and I am praying and wishing the best for you.

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: On to new stuff

Thank you to everyone who responded to my post.  My oncologist said the kidney pain is probably the cistplatin, although the Gemzar also can be hard on them.

My diet has changed to lighter foods, chicken & fish only, eggs and salads, steamed vegetables.  I'm also big on nutritional shakes with whey protein, wheat grass & chopped kale, fresh fruit & berries, or frozen when I can't find enough fresh I like.  It seems to help with my blood work a bit and it's easier to swallow and eat than a meal.  I also have a fondness for cheese and crackers and indulge it!

If my CT & MRI at the end of May show stability with the smaller tumors, my doctor is talking about me taking a break from chemo to give my body a rest.  What does everyone have to say about this suggestion?

Thanks to all of you out there.  Sometimes when I feel so alone with this arbitrary disease I just think of you all and those who have gone on before and it makes me feel better.

kaklon

Re: On to new stuff

Dear Kaklon, everyone needs and deserves a break and from what I understand Chemo and Radiation keep on cookin for awhile. Besides I don't think the ONC would give you that break if he thought it would hurt anything. Lets hope you can take the break and ENJOY it!

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.