4th Recurrence
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Hi Rod,
Great attitude there! Kicking the crap out of this we like, lots!! My dad took a lot of knock along the way with his fight and after every bit of bad news he used to get down for a few days then come back out swinging again. Keep on kicking it Rod!
My best to you,
Gavin
Again thanks to everyone for the prayers and well wishes. I think I have wrapped up my period of disappointment, anger and self pitty and am now back on the right mental track to kick the crap out of this stuff.
Marion, I have not had any molecular testing done. This doesn’t seem to be something the doctors here utilize. I will bring this up when I see my oncologist tomorrow and see where they stand with it and see if it is something else we could pursue. I have to admit it is something I struggle to understand even the basics for myself so it hasn’t been something I have pushed.
Rod
The fight continues, dear Rod. Forgot to mention, had molecular testing been done? Tons of good wishes are heading your way.
Hugs,
MarionRod,
Real sorry to hear this news from you about your visit today with Dr Chapman. I know that this is so not the news that you wanted to hear, but please do not give up hope. Like Lainy says, we have had members who have went through chemo and that has led them to be able to undertake treatments that they had not been able to do previously. My fingers are crossed that the Gem/Cis does what it should for you and I so hope that this goes well. Please know also that we are here for you and keep us updated on how everything goes.
My very best wishes to you,
Gavin
Dear Rod, sorry your appointment with Dr. Chapman didn’t turn out the way we hoped but at least you are leaving no stone unturned. As we say many times on here, there are quite a few members who had Mets, had chemo then were able to have surgery. Your attitude is great and will carry you far. Good luck on the chemo and please keep us posted.
Met with Dr. Chapman yesterday and he didn’t have any options available for me. Due to the spread outside the liver surgery and radiation are not options. He recommended going back to my oncologist here in Des Moines and continuing down th epath of systemic chemo. He did have quite a smile when I told him I heard of him from this site and that he has many very high reccomendations on here. He is a very nice person and you can tell he truly cares and would like to be able to help everyone.
I called my oncologist this morning and have chemo scheduled to start next Tuesday (Gem/Cis). I have also asked him to call Mayo and ask for a verbal second opinion from them which he is going to do. He said since they have seen me once before up there for a second opinion that he has a good working relationship with them and has been able to talk things over with them on the phone. We went ahead and scheduled chemo so we don’t lose any more time. If Mayo has something better we can cancel the chemo and go with their recommendation.
Disappointed Dr. Chapman didn’t have something available but understand the options are pretty limited once the cancer has matastesized. Maybe someday there will be better options or even better maybe this cancer can be caught and cured before it ever has a chance to matastesize.
Thanks for the prayers and positive thoughts. I send my well wishes, prayers and support to any and all affected by CC. I am working to do my part to up the survival percentages.
Sprinter….even if you don’t qualify for a transplant you may be able to reach out to other specialist for additional further treatment options. This is part of finding the best person for the treatment they specialize in. Keep up the good fight.
Hugs,
MarionThanks to everyone for the prayers and well wishes. This is a great place to have access to the great information and experiences with this disease as well as true support. I am looking forward to the second opinion with Dr. Chapman and trying not to set my expectations too high, just hoping to find the best option to fight this disease.
Brenda, very happy for your husband. I grew up in a small rural town in Iowa and I understand how much farming activities mean to a farmer. I am a pretty active person as well and I can truly understand how much more you appreciate being able to do even the little things when they have been taken away for awhile and dealing with the realization you may never be able to do those things again. I can’t wait to get out on the snowmobile this winter and ride dirt bikes next spring. I can accept the fact my sprint car racing days are probably over as that is something better left for the younger generation anyway.
I’ll let everyone know what Dr. Chapman recommends.
Sprinter…..Perhaps a radiation treatment can be useful as well. You will know more following your upcoming consultation with the surgeon. Based on recovery of your platelets a clinical trial may be suitable too. I am with you, dear Sprinter – on to the next fight.
Crossing my fingers on this end and sending tons of good wishes your way.
Hugs,
MarionHello Sprinter, My husband is a recent transplant success story done at Barnes. The whole team is wonderful Dr Chapman is the nicest Dr We have ever met, whith out him and all the others, I am sure Kenny would not be here today, what a Blessing. We have alot of hope for the future that we did not have untill we got that second opinion. Everyone should get opinions not settle, this is your life.I wish you all the good luck at your appt. It is well worth it, you never know. Kenny was turned down for a transplant at Mayo, I think because of his age, he just turned 68 but he is very active not OLD.
He is doing what has not been possible for the last 3 years, He’s a farmer and he has recoverd and back to doing the farming and enjoying every minute of it too !
I know that not everyone is going to benifit from a transplant but Barnes will tell you weather you could or not. I will keep you in my prayers
Hugs
BrendaHi Sprinter,
I’m with Lainy on liking hearing how your onc pushed you to seek further opinions from others and I am very glad to hear that you have an app with Dr Chapman. I so hope that you will get some good news out of this meeting and please let us know how this goes. Dr Chapman has treated many people and I know that you are in good hands. Remember as well that we are here for you.
My best wishes to you,
Gavin
Dear Sprinter, I loved reading that your ONC is all for another opinion. That’s the way it should always be! Dr. Chapman is a wonderful choice. I can’t wait to read what he suggests. I think 2nd and sometimes more opinions are so important so that no one, patient or Caregiver, second guesses how they handled this rare beast! Wishing you the very best Wednesday and please let us know what Doctor Chapman says.
Had an abdominal CT scan and a full body bone scan on 9/15. On 9/18 received the results and cancer has returned with several small lesions in the liver a 1.5 centimeter spot in the right lung and a mass on an abdominal lymph node. I was kind of expecting these results based on how I was feeling and some other symptoms. After discussing options with my oncologist he agreed now may be a good time for me to pursue a second opinion. He helped me reach out to Dr Chapman and I have an appointment scheduled for this Wednesday, 9/24.
I know there are no silver bullet solutions available but hoping I may be eligible for a clinical trial or at least something other than the traditional gem/oxy or gem/cis treatments. I am still experiencing some neuropathy issues from my last oxy treatments and my platelet counts are still pretty low(109) to try gemzar.
I am very lucky to be relatively healthy other than the cancer so I really hope to find something that will work. The gem/oxy treatments I did earlier this year did help clear up signs of previous cancer discovered in January of this year but I have had a spot in my left collarbone and now these new locations since I finished up the chemo the end of April.
I’ll see what Dr Chapman recommends and prepare for the next fight.
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