hi all,

things seem to have taken a turn for the worse on our end. i'm interested in hearing your thoughts.

chronology: my sister had a CT scan last friday, we had an appointment for 2nd opinion at USC on wednesday, met with a radiation oncologist from Loma Linda today and will be meeting with my sister's primary oncologist for decision-making on monday. 3rd round of chemo which was to be started this week has been put on hold until after our decision-making meeting.

the USC surgeon said because the growth has spread to the skin and the location of new tumor is so close to the main artery, prognosis is very poor. a second surgery would be risky and much more extensive (removal of lower left jaw and facial muscles) and reconstrution more difficult requiring muscle and skin grafts. and chance of recurrence ramain very high so he's not necessarily recommending surgical option. in his opinion my sister has 3-5 months left. we're now waiting for a comprehensive opinion from their tumor board.

radiation oncologist said because the recurrence is on the same side that has already been irradiated, another round of radiation is not likely to be considered, and proton beam radiation or IMRT wouldn't make a difference in this case. he's asked to see the original radiation films to give a final opinion.

my sister's oncologist has directly consulted MD Anderson re new/alternative chemo protocols. the only suggestion was new drug herbitax (spelling?) combined with radiation. in an informal conversation with him yesterday, he told me that because the recurrence is still local (same side as the original), there might still be a chance to control the growth through chemo and/or radiation. he thinks this will probably only buy time as the cancer is too agressive to hope for remission. how long will this buy? uncertain.

needless to say this has been a very difficult process. my sister's physically and emotionally tired of treatments and devistated by all she's been told. we're trying to tone things down this weekend and clear our minds before going in on monday to talk to my sister's oncologist.

i would like to hear any thoughts, but more specifically any advice in terms of questions to ask in the meeting and issues/options to consider in making decisions regarding what course of action to take from this point on. thank you for any feedback.

be well.

gita

Gita,

I am really sorry to hear the news. It sounds like the doctors all concur that there are few options, if any, left other than trying to keep your sister as comfortable as possible. I wish I had some advice to offer but it seems all the questions have been asked and answered.

Nobody could really make such a difficult decision other than your sister. Any further treatment may prolong her time here and the cost of that treatment would be her physical and emotional well-being. It sounds as if she is already quite worn from it all.

I wish I could tell you exactly what to do but unfortunately when the disease has progressed as it has for your sister, only the medical team can help disseminate all the data.

Ed

Gita,

I'm sorry I didn't see your post until today. I'm so sorry things aren't going well for your sister. If you get a chance to read this before the appt., along with the Erbitux, I would also ask about Iressa, Tarceva and Irinotecan as possible treatment options.

I believe the first 3 are non-chemo drugs. I know Iressa and Tarceva are considered sister drugs so there's probably not a lot of difference between them. Irinotecan is a chemo drug. I mentioned it because Irinotecan and Docetaxol worked for Heather for awhile and your sister's recurrence sounds somewhat similar. I think some of the alternative drugs are much easier on the body than chemo, which would be a plus since your sister has already suffered so much. You might also want to ask about adding one of the Cox 2 inhibiting drugs like Vioxx or Celebrex to the mix.

I am so sorry your sister has to go through this horrible time. I wish you strength in the days to come.

Rainbows & hugs,
Rosie

Gita, My prayers are with you, your sister, and your families.

Gita,

I re-read my post today and I just feel like it was so insensitive to say things the way I did. I hope you don't feel I was in any way saying you should give up hope and stop pursuing any other avenues. The truth is, my heart cries for your sister, you and the entire circle of family and friends. To get news like this at a time she is already so debilitated has got to be overwhelming for her and all of you.

I honestly don't have any suggestions in terms of medical care but I do have some general suggestions. I was curious if your sister is a US citizen. If so, there are a few things she could be doing now in terms of financial assistance, etc. I just wasn't sure so I thought I would ask.

I apologize for being tired last night and not saying things quite like I wanted to. I am thinking of all of you quite a bit and I hope for comfort and healing for all of you.

Ed

ed,

you didn't say anything insensitive, truely. i think this is the time for us to be facing things as they are, and it's the reality of the disease which is harsh beyond anything. in her case, it's all happened so fast and the cancer and consequent treatments have been so drastic and gotten out of control so quickly that we haven't managed to catch our breath yet and work through things. it's been 8 months of non-stop crisis which seems to keep getting worse by the day in spite of our best efforts. all of this to say that i've benefited immensely from the support, information and feedback you and others have consistently provided. this has been my space for learning and thinking through stuff. so thank you sincerely for being there.

and yes, my sister is an american citizen. she's getting some form of disability pension because she had to stop working, but i'm not closely familiar with this end of things. i will communicate any suggestions to her and her family.

update: we had to postpone our meeting with the oncologist today cuz we haven't gotten all the info from USC yet. it seems like we're in for a waiting game in more than one way.

be well.

gita

Dear Gita,

I am so sorry to read about the further complications your sister is having. I know you all must be reeling from all the things you've been told so far. I started to not post a reply to your message, but I recall just a few months ago being in your shoes and needing flat-out honesty. I hope things go differently for your sister than they did for my husband, who had a similar prognosis.

One month after he had major surgery to remove cancer from his hard palate, tonsil, and right neck, he had a recurrence metastatic to the skin on his neck/face. Doctors then said they could do no more to stop such agressive cancer. Long story short, we found that in all probability, no clinical trial would consider us knowing the cancer was metastatic to the skin. Our only options, according to our doctors, were to wait it out (they gave him two months to live) or take Iressa or Xeloda in the hopes that it might arrest the cancer to a small degree (10-20%, they said) and buy us some time. I'm not sure if we did get any extra time, but it made my husband feel better to KNOW he was doing something to fight the cancer with one last shot rather than just wait to die. He lived 7 weeks--he ended up dying from feeding tube/healing complications rather than from a ruptured carotid artery, which is how everyone really thought he would go. He did not have, to our knowledge, any distant mets. He was at home with me and my two daughters, and we were thankful the end was peaceful for him compared to what could have happened.

I'm so sorry to deliver this bad news about my husband's situation. I wanted you to know that although our first instinct was to hop a plane and go find a miracle, we finally had to listen to what the doctors told us: stay home spend time together as a family rather than be separated from loved ones by being half way across the states. (Scott opted to take Xeloda, a pill he could take at home, rather than travel to a cancer center for an IV concoction.)

Apparently "metastatic to the skin" is one aspect of this nasty cancer that can't be treated once chemo and radiation options have been exhausted. Maybe there are others on here who can elaborate, but this was my understanding and experience with this prognosis.

Whatever your sister chooses to do, I wish her peace and to be surrounded by love.

Christine

Gita,
You and your sister are in my thoughts and my prayers. I wish I could do something or say something to help.
Leena

Sometimes first instincts are best, not posting would have been the better choice. I have read this over and over again and I can't find the cry for a slap in the face, where is it?

Gita, you seem to have an excellent grasp on what is happening here and your sisters doctors appear to be proceeding with this difficult process with the appropriate caution.

Gita,
Keep in mind that not all cases of this cancer follow the same path. I pray that your sisters outcome will give us all the hope we need at times like this.
Love,
Minnie