ashley
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Welcome back, Kris.
We certainly missed you around here!!
The pool sounds like a great way to build your strength back up.
Keep us posted.btw.. Hans did a great job keeping us up to date on how you were doing – you are lucky to have such a wonderful caregiver
AshleyJill,
Our case was different. My mom was on medicare and they paid for everyhting UNTIL she was officially diagnosed with CC. Then when she was admitted into the Mayo protocol for transplant medicaid would not pay because they said it was experimental. BCBS was her second FULL policy ( not supplemental) and we were so lucky that they picked up her 450K bill for chemo, brachytherapy, dozens of CT scans ( never had a PET) and live donor transplant from my brother. Of course she will be on meds the rest of her life too. So in our case, medicare was the problem and BCBS helped save the day.. best of luck
ashleyHi Donna,
Are you near Boston?? there is a drug called Davanat that was used with 5-FU in trials a few years ago. It is manufactured by Pro pharmaceuticals in Newton Mass and your mention of Boston is why it is coming to mind. This company will work with you and your husband’s doctor to see if he can be on this drug. ( The CEO of the company left me a vm last summer when I inquired about it and this is what he told me). (However, my mother did not end up using it.) it supposedly allows delivery of 5-FU in greater amounts
( normally toxic to good cells) but davanat coats the chemo so the good cells are not affected. Not a cure, but it may be an option if your husband/doc is still willing to try another chemo.Perhaps you could ask your oncologist about this drug at your meeting tomorrow? If you want to email me at home I may have more info on this for you in my CC binder. ( yes, I have a binder!)
Ashley in CT
Hi Verun,
It sounds like your mother may also have the disease PSC? it is known for dilated bile ducts and cholanitis ( sp) or the inflamation of the ducts. PSC patients are more suceptable to cholangiocarcinoma. So maybe her symptoms relate to PSC and not the progression of the cancer. have your docs ever mentioned PSC?I agree that docs would not suggest cyber knife if the disease had terribly progressed. Keep up hope and stay strong.
AshleyHi Kris,
Glad to read you were home for Easter. Rest up and take it easy – We miss you out here on the board!
ashleyHi Leo,
I saw your posting on the PSC site earlier and I have been thinking of you all day. I can only imagine your dissapointment in the results after jumping hoops all last year with the protocol. I’m really sorry to hear about the biopsy.I am wondering if your docs would consider brachytherapy now since there is a specific area of 7mm? Brachytherapy most likely made my mother’s tumor necrotic before transplant ( they never found one on her old liver when they did the path report). When I asked the Mayo why she could have had just this treatment the response was that brachytherapy really destroys the liver ( as well as the tumor apparently) so you would need a transplant anyway. So brachytherapy done on a part of the stomach that may not be somehing you NEED and maybe that could be a treatment that can be done after the chemo? ( of course the other benefit is that it is not debilitating like a surgery). Depending on what your own docs say, you could even run this by the Mayo docs (Dr. Gregory Gores,etc) to ask their opinion??
Keep us posted with your treatment Monday and remember we will all be supporting you on BOTH the CC and PSC sites.
Ashley OreficeJeff,
My mother went through the Mayo transplant but had to do chemo and radiation first. We had a SIX week setback before the chemo started because she continually had fevers and infection and was in and out of the hospital so I know how upsetting these setbacks can be. Do you know what type of bacteria they keep growing with the cultures?? ( or are those clean?) My mother would generally be on 2-3 different antibiotics ( fungal too) and it got to the point where she went in twice a day to get antibiotics through an IV because the pills were not strong enough. Her infections were absesses around her liver that were too small to drain. Unofortunately it is catch-22 because being in the hospital they pick up all types of things. My only advice is to keep on them with the cultures and see what they are growing. It has to be something!
AshleyHi Laurie,
Sorry to hear your news on your diagnosis. I would also like to welcome you to the site where you will find helpful information.Has your cancer spread to the lymph nodes?? If not, microspheres is one option. Sloan Kettering MAY be doing it – not exactly sure but it would be worth it to look into. Dr. Kennedy at Wake Radiology in Cary, NC is a doctor well know for this treatment. If you call his office they should let you send your scans and he can tell you if you are a candidate without having to travel there first. My point is that I don’t like your doc throwing out those statistics – time for another opinion! Also – why is resection not an option?? Some docs will attempt to resect while others will not – another reason to look around. A few people on this board recently had resection through Dr. Myron Schwartz at Mt. Sinai – NY. If you do a search on both microspheres and Schwartz you should be able to find some more info.
Best to you and your family – keep us posted.
Ashley from CTHi Carol,
I have heard of Dr. Jarnigan and Sloane with the intrahapetic pump for colon cancer that has spread to the liver ( my coworker is cancer FREE due to this innovative therapy (Sloan pump and surgery), in fact their website specifically discussed this type of cancer. Interesting that you are using one for CC. I’m so glad to hear you are having good results so far and that hopefully this pump will allow surgery to become an option. There are others on here that have recently gone to Sloane so I would be interested in learning the doc’s reasoning as to why the pump may be offered to some and not others. Keep us updated and thanks for sharing.
ashley from CTHi Heather,
I’m very sorry to hear about your mom and I am sending prayers to you and your family. I hope you stay around on the site.ashley
Hi Tammy,
Welcome to the site and I am sorry to hear what your uncle is going through. My only thought is that if the cancer has not spread ( tumor only at this point) you may want to get an opinion with wake radiology in CARY, NC. Microspheres is the name of the treatment and it supposedly has few side effects and works well as long as there is a single tumor and his billirubin is not elevated. Dr. Kennedy is the doc. I’m sure you could call to see if your uncle is a candidate without him having to travel also. Hopefully Cary is close to where you are and his stent is working so that the billirubin number can come down.
take care and best wishes.
ashley from CTSethwoman,
Welcome. Please come back to the discussion board and let us know what you have learned. We are here to help and please realize many opinions may be necessary for this diagnosis – so when you have been told it is inoperable don’t lose sight that another doctor may find it operable. If you tell us what state your dad is in hopefully we can suggest doctors and hospitals.thinking of you and your family,
ashley from CT
