kris00j
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Both Dianne and Randi:
It’s so good to hear numbers before the words cancer free. It really does give us hope. It’s such a terrible disease that I for one really appreciate hearing that people have been able to beat it for over a year. I’m hoping that after my surgery in the next month or two (this is my 2nd surgery, where they are going to do the resection) I will hear the words clean margins and that 2 years from now I can post the same thing as you!
Actually, I hope in 5 years I can put a 5 in front of the words cancer free!!
Keep it up and post again, especially next year!!
KrisThanks everyone. I know I need the surgery but it’s scary…
And Jim, I really like Dr. Fong. I know you are a huge Dr. Kato fan, and if Dr. Fong had told me he still can’t do the surgery, I would probably go see Dr. Kato. But Dr. Fong put me at ease the first time I met him. He takes the time to draw (not very well, but…) so I can understand what he’s saying. And he’s a “real” person. I loved his hubris comment today.
The problem with the tumor is it’s wrapped at least partially (still) around the vena cava. And he doesn’t want to rip that. He never says he can promise perfection because he doesn’t want to tempt God to prove him wrong. I believe he is a highly skilled surgeon (he ought to be: he has people coming in from around the world) and that he can do the best for me. I believe Dr. Kato could do a successful resection, too, but I know he does much more difficult surgeries, too, and is famous for that. And he needs to worry about people that can’t be helped by the normal skilled surgeons.
I like Dr Fong, I like his sense of humor. We were joking about his daughters today on the phone. I like that he takes the time to talk to me when I need it. And he explains in language I can understand. He uses big medical words sometimes, and I usually understand what he’s saying, but if I don’t, he explains it. He makes me feel comfortable with having him as my surgeon.
And he said he could do the surgery now, but since the tumor has been shrinking all this time, I want to try to get it a little smaller so I have a better chance at clean margins. He agreed without hesitation, so I think I’m making the right decision!
KrisThanks Susie:
I have had 1 surgery already, so I know what to expect (unfortunately, I haven’t really forgotten). My activity restrictions are mostly due to that surgery. I don’t have quite the stamina I had, so I get tired a little easier. But I used to go nonstop, so I’m only slightly “slower” than a normal person I guess. Weight lifting is out, but I did buy 4lb. weights to use to try to tone my arms a little so I can lift myself up. I won’t be able to use my stomach muscles for 4 weeks, if I remember correctly.
I dance 2x a week. It’s a lot like a 3 hour aerobics class in 20 minute increments. I usually take a break every few songs. Depends on what the dj plays.
Thanks for the input! I like cheerleaders in my corner!Kris
Thanks Lainy. I, too, pray every night (and fall asleep during them because they’ve gotten so long!). I pray for a long list of people and I ask God to keep me in his white light and to give my oncologist and surgeon the wisdom and skill to get me thru this. I also ask him to let me live to 60 as a “healthy” person! (I’m 48). I want to be a decade survivor.
KrisSue:
I’m sorry to hear your husband has had growth during his break. That is scary. Did they say why they are continuing the same cocktail? Did it work well when he was getting chemo?
My chemo cocktail(s) were: systemically; Gemcitabine (9x) and Oxaliplatin (6x): and thru the pump, FUDR (3x). I don’t know what his cocktail is, but maybe you can ask the oncologist about other chemo options?
I haven’t had chemo since November 14, 2011 and that was Gemzar only. Since then my tumor has shrunk over .5cm total. I had not had a scan since Oct. 26th so I am not sure just how much was after chemo was discontinued, but my scan from late Nov. was .5cm smaller in one direction and the scan from Dec. 30 was .5cm smaller in the other direction.
So YES chemo does continue to work sometimes. I figure it should since I still have neuropathy in my feet! It’s only fair that if I still have side effects, it should still be working to kill the tumor.
As for whining: you are entitled to get upset and cry: just stay strong for him. Do what you can to keep him thinking positive. It’s hard, but it’s necessary.
And I’ve noticed that for some reason a large number of us have had healthy lives. I only went to the dr. for my yearly “female” stuff before this all started. I’ve seen more drs. in the past year than I have my whole life. And I’ve definitely spent more time in the hospital than I ever have before.
KrisMaria:
I am so sorry to hear about your loss. I hope that you will be comforted by the fact that you eased her passing. I will pray that you have the strength to get thru this and start healing.
It sounds like you had a very special bond with your mum: please remember that bond and use it! Find comfort that you were there for her, and that she knows still how much you love her.
KrisJim:
I haven’t been on this site for a few days, so missed your post until now. I am so sorry you have to go thru this worry of “what if”. I pray every night that a cure can be found for this horrible disease.
I will continue to pray for you and all of us with cc. Hopefully the new studies I’ve been reading about will yield a possible cure soon for all of us.
KrisIn retrospect, I wouldn’t have been such a “strong” woman and would have gone to the dr. 4 years ago when I had the first pains, which turned out to be gall stones. I always thought it was my back going out and when I went to the chiropractor the pain magically disappeared! I never had many pains, but I wish I hadn’t relied on “alternative” medicine and had gone to my family practitioner.
Then the gall stones would have been caught a few years ago and I might never have had to go thru this.
But, hindsight is 20/20 and this is the hand that God has dealt. So…
Hopefully in a couple of months I can say the best thing was relying on Dr. Fong’s expertise but I haven’t finished relying on him yet…Kris
Hi Appreciate:
I don’t know where you live, but i it’s cold you might want to add a scarf for him to cover his mouth with. My chemo was in the summer so I never needed a scarf, and I don’t remember quite how quickly those effects hit, but it’s better to be safe.
As for the nausea: they SHOULD give him anti-nausea meds along with the benadryl. I got both. The meds wore off after about 7 hours or so and that’s when I let myself get sick.
I will wait to hear the good news from you, too. Oxaliplatin is a wonder! Bad stuff, but from all I’ve heard, it’s pretty darned effective.
KrisAppreciateHelp:
I was on a slightly different cocktail. Gemzar and Oxaliplatin. PCL is correct with the neuropathy warnings. Wear warm socks, gloves and a scarf if necessary. I wear fur lined boots every day because the neuropthy in my feet is the worst side effect. And the hands will have sensitivity to cold, as will the throat. So avoid cold and ice until the side effects subside. The length of time that takes depends on the individual. When I had my first treatment the side effects lasted about 4 days. I had treatment every 14 days. The side effects slowly lasted longer. By treatment #6 I had tingling and burning in my toes that did not go away. So they had to take me off oxy. It is still working, however, as my tumor is still shrinking. And thankfully, my hands and throat are not too bd. Every once in a while I get a slight tingling in my hands and every once in a while really cold drinks bother me a little.
The other side effects I encountered were: Pretty severe vomiting the first night. This lasted about an hour for me. Then I was done. I had anti nausea drugs but when I took them I spent 4 days feeling nauseous. So I quit taking them and just letting the nausea take me for an hour. It was much easier for me.
The other side effect is slight flu symptoms and elevated temperature for some. I had that on the second day (but that might have been from the Gemzar, also).
I hope this helps.
BTW, my tumor shrunk so well on the Gem/Ox cocktail that I ended up feeling the side effects were definitely worth it!
Good luck and I hope that soon you hear the words shrinkage! I hope your husband’s side effects are minimal.Kris
Marion:
That’s the one I would pick… the one “lurking”!! Maybe a stalker? Haven’t dated one of them in a while!!
I have terrible taste in men… I think I need to have a friend fix me up! hehe
I know it’s off topic, but time for some laughs.
KrisHe didn’t say that during my appt. But he did say as long as it wasn’t leaking and I wasn’t having fevers or pain he wanted to leave it alone. He just said why risk it leaking into my body. But I will ask (if I remember!!). Chemo brain is really horrible: I don’t remember anything anymore! I wonder how long I can use that since I haven’t had chemo in weeks??
I do think it really has nothing to do with the cancer itself. It’s just a by-product of something blocking my bile duct. Could have been an elusive gall stone (they’ve looked and looked) or it could be from the small “tail” I had where there was a little bit of tumor near my bile duct at the beginning of all this. I thought it was gone since it isn’t mentioned in CT scans. I am sure going to ask him that when I see him!!
Kris
Thanks Lainy!! I needed the laugh! That cracked me up!!
As for impatience: I used to be very impatient. My new “normal” is waiting, waiting, waiting.
KrisThanks Jim. I pray for you nightly (along with everyone else on this site) that you get some good news and that God holds you close and heals you.
Being new at all this, I am still going with what the doctors say, mostly. Except for the first surgeon.
I knew a moderator or someone who knows more about what to ask for would chime in and fill in the blanks for Breakaway.
Kris
