ashley
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Hi Raye,
Did not know you had the same results..
which makes one wonder why brachytherapy is not standard ( outside the protocol) therapy. I did email one woman on here recently whose husband did brachy ( in PA I believe) but was not in a protocol and also had the tumor destroyed. This was the first time I had heard of this outside the protocol.Anyone have any thoughts?? the only thing I can remember the mayo saying was that it destroys other ‘stuff’ around the area so the patient may eventually need a transplant from the damage alone.. but maybe that is not the worst scenario IF it can succeed in killing the tumor??
If anyone can ask their doc and get back to the board I would really like to find an answer. It has no side effects like chemo or radiation ( that I recall my mother having).
thanks!
ashleyHi Jen,
Please make sure you check all avenues for transplant BEFORE starting chemo/radiation or any other treatment. Also – no needle biopsies. Prior treatments and the needle biopsy can disqualify a potential transplant patient as most of the centers performing them have strict guidelines they follow. I’m not certain about portal vein involment, but the people I have followed in the Mayo protocol USUALLY seem to have Klatskin tumors that are at the bifurcation where the bile duct splits. ( of course there may be many more scenerios). Please keep in mind there are only a handful of centers in the US that do the transplant protocol and if you are not already at one of them there is a chance your doctor is unfamiliar with all of your options. It is definitely worth a second or third opinion. My mother was sucessfully transplanted at Mayo after Yale gave her no surgical option.
Wishing you the best.
AshleyJeff
There is also brachytherapy treatment – part of the mayo protocol. radioactive beads are inserted into the tumor area down the throat assisted by robotics. My mother had this treatment last fall. Either this OR the radiation did a number on her tumor because it was not viable once they examined her liver after transplant.
ashleyGood morning,
Itching is also a telltale sign of PSC – which is a disease with scaring/inflamation of the bile ducts which then leads to a higher incidence of CC. it is not uncommon to be diagnosed with PSC then later have it lead to CC – this was the case with my mother. Just wondering if anyone diagnosed you with PSC first?
ashleyMy mother started at a CA 19-9 of 350 and during her protocol for transplant it was always in the normal range. Just to show that she had CC with a tumor and the CA-19 number did not necessarily reflect it. there are also people with cellular CC ( no tumor) with VERY high reading in the thousands.
ashleyMayra,
Sorry to hear about your husband. I hope the sirsphere is successful in shrinking the tumor. Keep us posting and we will be keeping you in our thoughts.
ashleyJeff and Mark,
Sorry to hear that you have to spend time dealing with benefits/insurance at a time like this.. I would just want to echo what Sue said.. that many times tumors can be reduced in size and THEN resection becomes and option.. You should also look into microspheres, esp if there is only ONE tumor and it has not metasticized. Very few side effects.. Not sure if you are up for travel but Dr. Kennedy in Cary, NC ( wake onlcology) will take your scans via mail and let you know if he thinks Mark is a candidate. Although I know bilirrubin has to be under a certain number.
Also wondering if they plan to internalize the drain? I know from my mom’s experience the external bag can really cause depression and limit your movement – she curtailed all of her activities because it was just very uncomfortable for her. When she went to the Mayo for her second option the first thing they did was internalize the stent and get rid of the bag. She went from being depressed and in a wheelchair to walking around within a day and most of the change was psychlogical ( my opinion).I believe I have Dr. Kennedy’s email on my home computer. If you are interested send me an email and I will get it for you.
ajackson0@snet.net
AshleyBeth,
My mother was also transplanted at the Mayo in Minnesota last November. For her protocol, they biosied ONLY the lymph nodes prior to accepting her into the protocol ( they were negative). Then after 4 months of chemo, brachytherapy and radiation it all came down to ONE staging surgery done the day prior to transplant. They cut her open to see if there were any mets. Luckily it had not spread and she was transplanted the next day. Had it spread, there would be no transplant we were told. I have read one story where a patient was transplanted and during the operation they determined it had spread but the surgery had already started. To my knowledge they will not transplant knowing that it has metasticized, which is why we need earlier detection for this cancer. Again, this is just my family experience and what I have learned based on our journey.
ashleyI’m so sorry to hear what your mom is going through. You are at the right place and hopefully you will hear good news from the PA tomorrow. I hope she is a candidate for Y-90 ( microspheres) because from what I have heard it gives results and does not have any side effects and can be well tollerated. Keep us posted and we will be thinking of you and your family tomorrow.
ashleyMarianne,
Welcome to the site. I am sorry to hear your news and was in your exact shoes at one point last summer. We ended up at the mayo last July after being told by our local docs they could do nothing and to our surprise Dr. Gores accepted my 66 yr old mom into the protocol and she was transplanted last november with my brother as her live donor. Please do not give up hope. Mayo will re-do every test and there is still hope he can qualify. ( Yale read my mom’s tumor as 3cm and a week later the Mayo’s test showed only 1cm!!) We were told by others ( even DR. Lindor at Mayo who specialized in PSC) they would not transplant someone over age 60 and Gores still accepted her. I will keep your family in my thoughts.
Ashley Orefice – Niantic, CT
ajackson0@snet.netHi Christina,
Welcome to the site. I don’t have any info on CC and colon cancer together, but I know on the CC side, if the patient is healthy and the cancer can be resected with good margins it seems to be prefered as the better option over chemo alone so it sounds like Chuck is fortunate to have the choice of surgery. Many people on this site cannot be resected initially and their goal is to then do chemo to shrink the tumors in hopes of allowing resection.. however, on the flip side, chemo alone has been effective in some cases.
Are chuck’s other docs ( mayo, etc) kept in the loop on this new tumor and whether they would suggest resection??
Keep us in the loop!
ashley from connecticutHolly sue,
We live in East Lyme, cT and also went through Yale last summer. My mother used Dr. Caldwell and Dr. Ronald Salem for her first opinion.
I’m glad you have found Dr. Saif and are headed in the right direction.
ashley orefice
ashleyaorefice@yahoo.combtw – I’m not understanding the request for a biopsy.. a needle biopsy or a brush biopsy?? there is a difference that you may want to ask about . Feel free to email me if you want.
Good luck!Michelle,
Very sorry to read your post, but Welcome to this site. I have two comments/questions.
1. What size is the Klatskin tumor?? ( certain hospitals do liver transplants ( search “mayo transplant protocol for cholangiocarcinoma” on the internet but there are strict criteria and usually the tumor size is 3cm or under.2. Many times chemo.radiation can shrink the tumor then allowing possible resection. ( although the location of a klatskin is harder because it usually is located where the ducts split.) So keep this in mind.
3. Based on what your doc has said I would definitely get another opinion – there ARE other options and treatment out there. (chemo/rad/microspheres/RFA)
4. you can probably do a search on this site and find other docs in your area..
good luck.. keep us posted
ashley
