I am a candiate for the shake and bake but based on our discussion yesterday I am not convinced this is a worthwhile procedure. The "cytoreduction" is the part which removes the tumor (which I don't have -- I have strands) and the HIPEC is the shake and bake part which tries to catch and kill all the cancer cells in the abdominal area at an increased temperature during 8-10 hours in surgery. The "catches" as Dr. Bagaria explained: (1) no one can tell you if it works since the trials over the past 10 years have been small and not as rigid as they need to be (2) patient selection has oftentimes not been good and (3) there are significant morbidity and toxic effects. Between 30-40% of people experience some type of heinous side effect: death is up to 10% within 30 day post op. The toxicity of the chemo can eat away at the colon and any reconnect would vanish, although he would not even recommend a reconnect concurrent with this procedure. ( This is now the third surgeon: Dr. Ahearn at Mission, Dr. Metzger last week at Mayo, and now Dr. Bagaria at Mayo saying I will be on the bag the rest of my life).
We continued to discuss my mortality and the data suggests with signet ring cell I am looking at a 5 year survivability of about 5-8%. Most "incidents" as Dr. Bagaria said it, are within the first two-three years. We have beaten the odds so far in that when I was admitted to Mission in September, 2010 they expected me to survive only about 90 days but that was without chemotherapy. The chemo bought me several months! I hope it does so again. That is the route we are taking starting in January. I know the side effects could be tough, but death is clearly not on the table at this juncture. The biggest issue, of course, is that the cancer will metastasize into the lung or liver. I will get CT scans every 90 days to keep that in check. I am a little concerned about the peripheral neuropathy but thank goodness we are in a warm climate so that pain is minimized. I tried Lyrica which was not helpful so maybe they will invent another med for this soon? I don't really care about my hair or other issues I have heard about since they are not painful but the neuropathy can be so intense that you cannot be outside in cold weather at all.
The Wound and Ostomy Nurse was pretty good. I have been plagued with pain from the stoma for a long time. She suggested I talk to another surgeon at Mayo, Dr. Lanham, and see if I can get a re-siting of the stoma. It was placed, because this was emergency surgery, directly on my waistband. That has caused untold issues with pain, so if I can get this re-sited that would be wonderful, esp. since the idea of a reconnect is out of the question. She said he might even be able to do it laproscopically. She also helped with additional resources and we had a little cryosurgery on the ring of the stoma which in my life, ranked at about number 2 in pain. Only the barium enema was worse. But it healed in about two hours so all is well now.
Can you tell I hate pain? I honestly believe that there is no need for pain any longer with all the pain medications out there.
So that's it from the health department. Hope all of you are enjoying yourselves and thanks for your support!
So sorry Peggy. We'll keep on praying. Love to you and Pat.
ReplyDeleteBrother Bill & Pat
Hi Peggy-As always, thanks so much for the update! We have been thinking about you and Patrick a lot and I know this has been a really difficult week. I am so glad that you have had the opportunity to consult with three surgeons. As confusing and frustrating as it may be to hear different opinions, it is great that you have three wonderful doctors who are giving you input. Of course, I know absolutely nothing about the shake and bake (other than what you have told me) but it sounds scary. Just the name alone worries me although I know it’s just a nickname (and they come up with a silly nickname for every procedure). And you are exactly right when you think back and realize that your chemo helped so much and, even though chemo is awful, it sounds like a good plan. It must be hard to have gone through it already and now face it again BUT you can do it! And hopefully you will feel a little more prepared since you know what to expect (not that it’s easy—but you can be realistic). From what you said it sounds like there are several options for your chemo meds so hopefully you and your doctors can decide the best combo to try. The neuropathy sounds like such a nightmare!! Natalie will definitely let you know if she has any ideas of other meds that might help alleviate the pain. Unfortunately, from what I understand, Lyrica is the best one right now. I think it is so fortunate that you had just finished building your house in FL before your diagnosis. Otherwise, you would be stuck in Asheville, freezing and in pain, instead of having your lovely warm house in sunny FL. You have mentioned before that it is a really peaceful place and I’m so glad it has worked out for you to stay down there. On top of all of this bad news about cancer and the reconnect, I really hate that your stoma has been so aggravating and painful. Cryosurgery . . . yikes! I hope you screamed during the procedure (I would have!). I am so glad that re-siting might be an option for you. No wonder it has been so difficult since it has been located in the wrong place. I remember you saying (right after the initial surgery) that they usually have the patient sit and stand and bend and everything to choose the proper location. Having it directly on your waistband must be SO frustrating and cause so much additional irritation to the skin. Hopefully it is healing somewhat since your appointment and, hopefully, the cryosurgery was worth the pain it caused. I completely agree with you . . . in this day and age with so many new medications there is no need for pain! Anyway, I hope you and Patrick are having a relaxing weekend and doing something fun. You deserve it!! Have you put up decorations yet? I know you said you have already finished shopping!?! Tell Reese and Allie hi, too! :) Michelle
ReplyDeleteHi Peggy,
ReplyDeleteI was speaking with Michelle a few days ago about my experiences fostering animals for Asheville Humane. She is thinking of fostering some cats or kittens and wanted to ask me some questions. In the course of our conversation, she asked if I had read your blog lately or spoken with you. I told her I had not, but that Barry and I had dinner with you and Patrick before you left for Florida. Then she gently told me the news that your cancer has returned. I was blown way. So I logged onto your blog and have been reading it and catching up with what has been happening in your life. Your positive attitude and demeanor are amazing and inspiring to all of us. We hope and pray for the best possible outcome and as little pain for you to endure as possible. I'm so glad you are cruising and visiting such exciting destinations and doing fun things during December. Those good times will help you get through the tough times in January. Enjoy every minute of your trip and know that we're all here for you 100%.
Hugs,
Sharon and Barry