Had a new scan yesterday after 6 rounds of Gem/Cis.  Scan showed new spots in the liver and some of the pre-existing spots had grown.  Luckily nothing is immediately life threatening and I feel relatively good considering CC is continuing to spread in the liver and remains in the lung and lymph node. 

When originally diagnosed 3 years ago I had a resection and 3 months of Gem.  CC stayed away for 18 months and then returned.  Had microwave ablation.  Returned again and had cryoablation.  Returned again and did Gem/Oxy and this wiped the cancer out.  It returned yet again 3 months later and that is when I started Gem/Cis.  The numbness from the Oxy the first time kept us away from it again. 

My oncologist is out sick today so haven't been able to talk to him about what he recommends next.  Will be talking with him early next week and would like to have some options to discuss with him.    I am 47, good health other than CC, have a 4 year old son I have no intentions of leaving early, am a good fighter and in the mood kick the crap out of this stuff.  Looking for next option whether it is another chemo drug (Folfox or whatever?) or any clinical trial. 

I received a second opinion from Dr Chapman at Barnes Jewish prior to starting the Gem/Cis.  He specializes more in surgical solutions and recommended same thing as my local oncologist.  Also received a second opinion from Mayo through my local oncologist and they also recommended the Gem/Cis.  They had a possible clinical trial but couldn't recommend it over Gem/Cis.  Don't recall what this was but this may be what I try next.  Can anyone recommend any other hospital or cancer center that may be better for a second opinion for someone in my situation?

Thank you for reading.  Best wishes to any all affected by CC.

Rod

Had a new scan yesterday after 6 rounds of Gem/Cis.  Scan showed new spots in the liver and some of the pre-existing spots had grown.  Luckily nothing is immediately life threatening and I feel relatively good considering CC is continuing to spread in the liver and remains in the lung and lymph node. 

When originally diagnosed 3 years ago I had a resection and 3 months of Gem.  CC stayed away for 18 months and then returned.  Had microwave ablation.  Returned again and had cryoablation.  Returned again and did Gem/Oxy and this wiped the cancer out.  It returned yet again 3 months later and that is when I started Gem/Cis.  The numbness from the Oxy the first time kept us away from it again. 

My oncologist is out sick today so haven't been able to talk to him about what he recommends next.  Will be talking with him early next week and would like to have some options to discuss with him.    I am 47, good health other than CC, have a 4 year old son I have no intentions of leaving early, am a good fighter and in the mood kick the crap out of this stuff.  Looking for next option whether it is another chemo drug (Folfox or whatever?) or any clinical trial. 

I received a second opinion from Dr Chapman at Barnes Jewish prior to starting the Gem/Cis.  He specializes more in surgical solutions and recommended same thing as my local oncologist.  Also received a second opinion from Mayo through my local oncologist and they also recommended the Gem/Cis.  They had a possible clinical trial but couldn't recommend it over Gem/Cis.  Don't recall what this was but this may be what I try next.  Can anyone recommend any other hospital or cancer center that may be better for a second opinion for someone in my situation?

Thank you for reading.  Best wishes to any all affected by CC.

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(13 replies, posted in General Discussion)

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

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(13 replies, posted in General Discussion)

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.

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(13 replies, posted in General Discussion)

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.

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(13 replies, posted in General Discussion)

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.

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.

Hi all,
I had a 3rd recurrence of CC in January of this year.  A couple small masses in the liver, couple small spots in left lung and a mass on a lymph node.  I went on chemo, gemzar and oxy for four months.  After 2 months, on chemo a PET scan showed no signs of cancer anywhere.  Great news and fairly shocking as I know this is not normally the result.  I continued with the chemo for the planned 4 months.  Last week I had another PET scan and received the results yesterday.  The good news is there is still no signs of cancer in my liver, lungs or lymph nodes.  The potential bad news is there is an area in the bones of my shoulder that lit up and looks like cancer.  I am working to get a biopsy scheduled for confirmaiton. 

My oncologist said he would be surprised to see it show up in the shoulder bone when it was cleaned up everywhere else.  Has anyone else seen a recurrence show up only in the bones? 

I may be jumping to conclusions and maybe it isn't cancer but it looks very much like it is.

Thanks

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(8 replies, posted in Introductions!)

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.

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(8 replies, posted in Introductions!)

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.

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(8 replies, posted in Introductions!)

Thank you both for the replies.  Great to have the positive thoughts and words of wisdom.

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(8 replies, posted in Introductions!)

Hi all, Rod here.  First off, thoughts and prayers to all who have been affected or impacted by CC.  I am a 46 year old, 19 month survivor of CC.  I had CC of the intrahepatic bile duct.  Was very fortunate to have surgery which took about 65% of my liver, my gallbladder, a couple of affected lymph nodes and the addition of a stent.  I did 3 months of Gemzar chemo and other than an absess and a couple infections after the surgery I have done very well.  I liked to be active before my diagnosis and I have been able to return to all my normal activities.  I was even able to race a sprint car again a couple weeks ago for the first time since my diagnosis.

I have a fantastic surgeon, Dr. Chaudhry and a very positive and supportive ONC in Dr. Heddinger.  Both through Iowa Methodist in Des Moines, IA.     

Last week after a quarterly CT scan I found out I have another small mass in the liver.  About 1cm in the left lobe not near any bile ducts and the plan is to use radiofrequency (RF) thermal ablation to remove this tumor on the 18th of this month.

I haven't seen much on here about the radiofrequency (RF) thermal ablation process and was wondering if others have experience with this procedure?