sprinter67
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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
Serena,
I had a liver resection for intrahepatic CC and had most of my right lobe removed along with my gallbladder and a bile duct stent was inserted. I also ended up with an absess due to leakage. I lost about 35lbs in 6 weeks, 185 down to about 150. I lost my appetite for quite awhile, partly due to the antibiotics causing most foods to taste different to me. My doctors recommended me eating anything I wanted and to focus more on gaining back some weight as opposed to focusing on nutrition. My energy level dropped quite a bit as well, at my weakest point, brushing my teeth and taking a shower would completely wipe me out. Once I was able to start eating more food, which was after a couple months, my weight and energy returned very quickly. I experimented with lots of foods and often something that seemed good to me for a while would lose its appeal and I would need to move on to something else.You are to be commended for being there for your mother and doing everything you do. It isn’t easy going through CC and it isn’t easy being a caregiver either. Keep doing what you are doing and get your mom anything that sounds good to her. Best wishes to you and you mother.
Rod
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.
Thanks 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.
Hi Patzel,
I recently had cryoablation on a lesion in my collarbone of my left shoulder. After 4 months of chemo for multiple masses in my liver, lung and a lymph node a scan showed all those issues had been cleaned up by the chemo but there was one lesion in the collarbone. The cryoablation is a fairly simple, non-invasive procedure that was similar to the biopsy in that a needle was stuck into the bone, liquid nitrgen was used to freeze/kill the cancer and then the next day the hole was filled with bone cement and procedure was complete. Not sure this would be an option for the location and size of your husband’s rib met but I would recommend at least checking to see if it is an option. My procedure was about 3 weeks ago and only pain I feel now is similar to how a bone fracture feels as it heals. I know there is some concern with this procedure when the location is close to nerves, my lesion was contained within the bone well enough the risk was minimal.Either way I sincerely hope you can find a procedure that will work to alleviate your husband’s pain. Pain can wear a person out, cause changes to their normal disposition and put stress on caregivers when there is nothing they can do to help. Best wishes for your husband and you as well.
Was able to get the biopsy moved up and it did confirm cancer in the shoulder bone. I have a cryotherapy procedure scheduled for 7/23 to take care of this. Then, back to the quarterly scans to try to catch things as early as possible if and when they show up. This is my 3rd recurrence and I feel extremely fortunate that I have been able to come through these and still maintain a relatively normal life once completing an ablation procedure or chemo. My thoughts and prayers are with everyone who hasn’t been as lucky.
Thanks for the reply Marion. I did some searching before posting and just wasn’t able to find anything conclusive. Most posts I read related to bones seemed to state or hint that CC was also elsewhere.
They scheduled the biopsy for 7/21 but I will talk with the oncologist when he returns Monday to have that moved up. I don’t want to wait that long.
Thanks Lainy. Received a call from ONC late yesterday afternoon. He said the biopsy confirmed the mass I had burnt was CC as we had expected. No plans for further treatments as far as chemo or radiation. We will continue 3 month scans to stay on top of any future returns and handle them with microwave ablation if it returns as a single mass like this last one and if it returns in multiple spots then we would look at other options at that time. Or if it never returns we won’t have to do anything(never hurts to hope).
Thanks again for the replies and positive thoughts from everyone.
Had microwave ablation on 9/18. Went well from what I can tell. Radiologist who performed the procedure felt good about how things went. Recovery for this process has been pretty easy, just some crampinng around the burn area along with some tenderness and some fatigue from the pain meds. Currently awaiting results of the biopsy and consultation with ONC to determine next steps.
