Thank you for all the suggestions for my hands! My husband is going to the grocery store later today and I'm going to give him a list! He's doing all the grocery shopping and cooking and laundry and helps me with other stuff I can't do anymore. I feel fortunate to have him!
Yesterday I saw primary care doctor as I needed a referral to a different gastroenterologist. My own pc doc only works two days a week and getting an appt to see any doctor there can be challenging! Anyway, I liked him and felt heard! He suggested concentrating on my diet rather than seeing a gastroenterologist. My diarrhea this past week is probably from the contrast I had to drink for a CT on Tuesday. I've not had that happen before, but did wonder if it was the cause. Since having the gastrojejunostomy in October, my digestion has been a problem but this week was by far the worst! I was given written info about how to eat to best digest food with this removal of part of the small intestine--I gotta hunt that up and be sure to eat alot of fiber! When I asked about cauliflower, and similar veggies, he lit up and said there is recent research that cauliflower has aslot of health benefits (I'm saying that because my short term memory isn't great and I don't remember exactly what he said, LOL. ) We like cauliflower alot!
Monday I have an appt at the cancer center. Will talk about either going off Xeloda or reducing dose. I like the idea of one week on, one week off.
I do have some gloves to wear--one cotton pair, one silk pair, and several pairs with soothing gel in them. My hands sure are important day to day! The things we learn during this crazy cancer journey.
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PJBinMI
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I'm having gastro issues too ... my guilty pleasure now is oatmeal with banana milk, I love it! I make the banana milk by adding some banana extract to regular milk as banana milk is certainly hard to find, then a few sweeteners add to the taste! bon appetite! sure hurts my feelings though ... having to give up jalapenos and salsa, which I made alot of guacamole with some salt and salsa, but now I have avocado toast which is also quite good, no salsa. Thank You Jesus that I can still take my aspirin! It is not my stomach per se but the hyena hernia that was tiny but I think has gotten bigger and is now giving me grief. I loved eating junk at night and watching tv, now when I do it, I pay dearly! oh, this may help you, tums did nothing hardly, pepto - nothing, MOM - nothing, BUT alka seltzer takes out the acid from my esophagus, OR 7 up works also but the one I had last night had gone flat so I threw in a alka seltzer. My new doctor said her hubby takes the alka seltzer chews and that they are quite effective, however, penny pincher me had to 1st try the off brand alka seltzer ... will buy the chews next time. Also, how come since many of us are getting old and having problems with our teeth, everything is now coming out in "chews"? lol anyway ... hope I gave you a chuckle and so sorry you're hurting. yes, this hellish cancer is definitely a roller coaster! God bless you and heal us all in Jesus name, amen! ALL things are possible in Him! <3 xo
Love to see your fortitude! Your husband is a gem but he doesn’t want to lose you. I have a husband that’s also my soul mate. We lift each other up so we can keep going. I hope you can reduce the dosage and find comfort. I seem to remember reading someone recommending Epsom salts to help with blisters. J love cauliflower too but it gives ny husband a lot of gas. With all my tummy challenges I’m not sure if I notice. Today I’m going to make butternut squash and mushrooms on puff pastry for dinner. I doubt the pastry will agree with me but we’ll see. Take care and I hope you get resolution. Chris
my twin. I had a gastrojujunostomy 5 1/2 years ago and I am still trying to find the magic to remove the diarrhea and pain from it. I live in Rochester NY and go to the Rochester Regional Hospital System. I also have physicians in Memorial Sloan Kettering in NYC. They have a research lab that studies my exact cancer. The doctor at MSK consults with my local oncologist. Locally it’s a match.
I was on Xeloda and it made me angry. Now I am on Piqray and have diabetes two so have a doctor at MSK for this, and a palliative care PA who gave me my sanity back. She told me to only use Lidicaine on my tush. It made an immediate difference.
For your hands and feet, I used Udder Cream. They only peeled once for me. Good luck with this.
My oncologist told me that we don’t know what my plumbing looks like so it is hard to treat. I have diarrhea every morning up to 5 or even 8 times. I shower. Take my morning medicine and pain killers, and Put on some sweet smelling lotion or cologne and go out the door.
I think you are fabulous! You don't let cancer define you! You get up and walk out that door! I love it! I have a girlfriend who pretends she has cancer. It makes me absolutely bonkers to listen to her. I guess she wants people to feel sorry for her? A few years ago she had a biopsy for a tiny tumor in situ. No treatment or anything required yet she tells everyone she has breast cancer. Wow! How many of us on here wish we didn't! I just finished 13-months straight at MDAnderson Cancer Center in Houston. This was my 2nd time. I was there 25 yeas ago but this time it spread itself around. So far , my scans are completely clear. They almost killed me with chemo but it was worth it. I got my life back! That is a miracle if there ever was one. A group of girls I went to high school with said (and still say) the Rosary for me every Monday night. What a blessing and it worked so far! We all wait for the other shoe to drop I know, but hopefully it won't be for a long while. If it does, I hope to be like RBeth and put my troubles behind me and walk out the door!
Definitely ask about one week on one week off. It is supposed to produce equally good results but less side effects. I’m on the 1/1 protocol and have not had the hand foot syndrome. But it has stopped the growth of my tumors. Hoping all goes well for you.
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