kris00j
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My advice for anyone on this site is to be fairly specific in the topic if it’s a new post. For example, when discussing the clinical trial, I usually put the drug number. Or if I wanted side effects from gem/Ox that was the topic. It helps when using the search function.
While no website is perfect, I, too, await the changes. I’m not sure how it will affect how we do “business” here. Hopefully it makes searching easier.
I try hard to answer posts where I feel my experiences as a patient are relevant. However, I have not had many of the newer, less tested treatments, so all I can do is empathize with people over nerves, etc. I, also, find it difficult almost all the time to read some of these posts. But I want to help.Caroline,
I was also reluctant to rely on oxycodone. I was told to be careful driving while taking it. But I was also told that pain is detrimental, so I should take it if necessary. I usually took 1 or 2 a day… But mostly 1 at night. Oh, and it is 5 mg. I am allowed 1-3 for pain every 6 hours or so. I find that IF I take any, that 1 is fine.Caroline,
Let me also welcome you to our little family. I think everyone has good tips, but here’s a little bit that I had to worry about when on chemo because my blood counts dropped.
Some food restrictions depend on the blood counts because of risk of infection… I was restricted to only cooked veggies. I wasn’t allowed to eat raw veggies because of the risk of contamination. Same goes for fruits, although if I washed the outer layer and peeled it I could have bananas, oranges, apples, etc. I washed them WELL and washed the knife constantly while cutting.
I found I lost my taste for certain foods. Tomato sauce was one, maybe because of the acidity? Not sure. I’m okay with it now, but never got my love for plain old spaghetti back.
Oh, and try to cut down on processed sugars. Sugar, sucralose, fructose, high fructose corn syrup, etc. I try, but refuse to give up my chocolate!
I hope you have a wonderful trip, and can leave SOME of the worry behind, if only for a short while.Mary. If I were to guess you are Saints fans?
I was given FUDR in addition to Gemzar and oxaliplatin. FUDR is a form of 5FU I think.
My feelings on the journey? Get as many consults and opinions as you are comfortable with. I love live love Dr. Fong at Sloan Kettering (surgeon) but was unhappy with the personality of my onc (Dr. Kemeny). I got good results, overall, but finally left Dr. K after 2 years for a more open, compassionate, and informative onc in another cancer center.
I believe you must also like your treatment team. It certainly helps. And of course, the more knowledgeable, the better.Good thoughts and prayers for some wonderful news!! And, unfortunately, waiting a week is not as uncommon as you think. While at Sloan Kettering, I almost always waited at least 5 days.
Keep positive thoughts that the news is gonna be great, and TRY not to stress while you wait.When the tumor in my liver (I try to NEVER say “mine”) was initially found it was irregularly shaped with a thin tail leading to the bile duct. By the time I began treatment (2 months) it was pretty round and well defined, but still had the thin trail to the bile duct. So I have seen both shapes with this tumor. The original onc hoped it was benign because of the irregular shape, but the biopsy concluded differently. Within a few short weeks, the tumor had formed into a more cohesive shape.
I think Jason summed it up well.
Remember, chemo, in most cases, will eventually become ineffective.
Also remember, chemo will continue to work on the tumors for a while after discontinuing treatment.
If the tumor is responding, there may well be other therapies that will work better now, while saving the gem/cis in case it is needed.
Congratulations on shrinkage! And soon you get to find out what the next step will be.Faith is a strength I have learned to lean on, also. It took me 2 years, but I finally figured out that God has a plan.
I am sorry to hear about your news, and happy you are still able to work. I hope you have a wonderful holiday and that you and your family create some great memories.
My youngest brother and his family lived in Greeley, but moved to Fort Collins last year (I think). Or the other way around… The mind doesn’t always remember the details anymore…..
Beautiful country!
God bless,Surfer… We have all been somewhere similar. It’s hard to know what to ask. Get a notebook specifically for cc info. Questions are hard… One question will lead to another. Just make sure to write down his answers. Then when you think of new questions you have a place to write them down.
To answer with what info I have: most treatments will not interfere with possible resections. And they usually won’t do surgery within a few weeks of chemo. And they won’t do chemo for a few weeks after surgery.
Without knowing specifics, there are many treatments available without surgery. Talk to your surgeon about all options. Ask as many questions as you can and write everything down. I can’t stress that enough.
Good luck! And I hope you can get that second opinion easily.Hi, sorry to chime in so late… Don’t know how I missed this.
Yes, I have a tumor in section 8 predominantly. It is wrapped around the vena cava and has already taken 2 of the 3 hepatic arteries. It sounds like a similar placement??
I was given a glimmer of hope for resection. We did a portal vein embolization. I believe the left side continues to die off as the right side grows… BUT the lymph nodes exploded so I am no longer a surgical candidate.
If you can get the biopsy genetically tested to see about any info on which chemo works best, great. I had gem/Ox for 6 cycles and it worked wonderfully. Side effects are rather difficult for most of us. I also had gem/Xeloda, which worked on the tumor, but not the lymph nodes.
By the way, we ALL hate this cancer!! So vent away!
And if you didn’t have enough to worry about, you have the business, too. Hopefully that worry is mostly over and you can again concentrate all energies on fighting the monster.Sam, my prayers are with you and your family at this time. I am happy to read she dealt with cc on her terms, with no regrets. And to be united with her first born… What a wonderful gift!!
