Returning to the forum with good news and bad news

[jim-wilde]

Good luck with surgery. Hope you’re up and about quickly!

[mustangmort]

Jean, today is the day of your surgery. I am thinking about you and praying that all will be well. May you recover quickly and return to enjoying life to it’s fullest.

[rick]

Hey there, there actually is a limit, there always has been.

It’s 35,000 characters. I doubt you typed that much.

If you experience it again, can you tell me exactly what the message said?

Thanks!

[marions]

Jane…Rick will keep an eye out for it. Hopefully it does not happen again.
I have to get used to this new look myself but I also understand that Rick needed to provide us with an updated site. Please, let us know if the same problem exists for you.
All my best,
Marion

[pcl1029]

Hi,
What I did when that situation happened;I click the back arrow once on the top left hand corner and recopy the message that I have just entered.Lockout and lock in again and paste it back to the message board and hit submit.
God bless.

[jean]

Thanks Marion! It does seem strange that the message length is limited…at least for me! Last night I tried posting a message after logging on and when I tried submitting it I couldn’t because I “wasn’t logged on”. Then I tried logging in again and my message disappeared and had to start over. I don’t seem to be having good posting luck!

Thanks for checking into it as I’m wondering if others are having the same problem.

Jean

[marions]

Jean…thanks for the clarification on the dinner and the compliments.
Jean, I will try to find an answer to the problems you are encountering with the posting of your message. It would be silly to have restricted message lengths.
I will let you know.
Again, good luck on Wednesday.
All my best wishes,
Marion

[jim-wilde]

Jean, yes, I had six months of Gemzar within a few weeks of discharge following the resection. The onc said at the time that they really didn’t know if it would help or not. It was just their best guess. I would have had Cisplatin as well, but other medical conditions precluded that.

The current situation is not lab quirks, since similar results are yielded from our local hospital’s lab and NY Presbyterian’s. I’ve had superb care at NYP and my onc really stays on top of things. It is puzzling to get clean CT and PET/CT’s (neck to mid thigh) with the funky blood results. So far, no answers. Like many of us, I have resigned myself to a time of always looking over my shoulder!

[jean]

Reply Part #2
I evidently write too long of messages so will again continue with a second message!

Marion…Thank you for your welcome. It was a gentleman by the name of Jim who joined Lisa and I for dinner that night. Diane wasn’t able to come and I believe her husband, Brad, had recently passed away at that time. I was very glad that I had the opportunity to meet Lisa…she was a very special person. Marion, you amaze me. You are such an advocate for everyone who comes here and really for everyone with this disease. I hope you know what a difference you make and what an impact you have.

Thanks for ALL of your responses. It really does make me feel less alone in facing this journey.

Jean

[jean]

I just wrote a long post that wouldn’t go through, so will try again!
Thanks for everyone’s welcome. Each of your messages has meant so much to me.
Jim…I can’t imagine how unsettling that must be. I’m hoping that it is just some quirks in your lab work and isn’t reflective of a problem. It’s good to hear that they’re keeping on top of things just in case. Did you receive any chemo after your 2009 resection?
Lainy…I was so sad to hear that you had lost your beloved Teddy. I’m so glad that you remain here as a warm, caring and knowledgable face to those coming to this site.
Percy…Thanks for all of your information. I appreciate it so very much. It sounds as if RFA may be comparable for small tumors, but I just feel a lot more comfortable with a resection. With regard to a PET/CT my surgeon believes that the single liver lesion is the only site of disease and that surgery would be the best means of determining that. I’ve gone back in forth in my mind regarding that. I do have concerns that if something suspicious was found, that it would rule out potentially curative surgery. It is perhaps more my gut feeling about my situation than anything! Thanks for the advice on sending the tissue for testing, I will definitely have that done.
Diane…Thank you so much for your message and email. It means so much to me. I was so sorry to hear about Lisa. She fought so hard and was truly an amazing person. I’m very glad that I did get to meet her.
Pam…I appreciate your positive and hopeful message. My thoughts have been with you and Lauren and am hopeful that her tumor shrinkage will continue!
Cathy…I’m so glad that you continue to do so well! You’re story is such an amazing one and I think that you’ve brought many people to that potentially curative option. Transplant does seem to be under utilized and I’m glad you’re there reminding everyone of that possibility.

[marions]

Hi Jean…..Diane beat me to it but I wanted to also tell you that I remember you wanting to meet up in Washington with several others. Jean, was there not one other gentleman joining in or was that gentleman Diane’s husband Brad?
I am sorry to hear of the recurrence and want you to know that I will be thinking of you on Wednesday and that I am sending a tidal wave of good wishes your way. My fingers are crossed for a quick, clean, and absolute resection of your tumor for once and for all. Others have had that good fortune and there is no reason to believe that you won’t be part of that lucky group.
Again, all my best wishes,
Marion

[jathy1125]

Dear Jean-I am also a CC survivor. I am 2 years cancer free and cured! My HOPE was a transplant, my miracle worker was Dr.William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman, like Dr. Gore is a leader in CC, unlike most doctors he will take your phone call. I have had several people contact me in the last year about him, some have had great out comes and others haved there opinion validated. The common thing is they all are amazed at his “heart” and the fact that he will take a phone call!! I have his number on speed dial so if I can help, please email me.
Lots of prayers-Cathy

[pamela]

Dear Jean,

Welcome back. I am fairly new to this site but as you can tell by the number of my posts, I am an active participant. I am sorry you are facing new challenges but I have to say how wonderful that you have gone 3 1/2 years and been well. I think that is a good sign that you will be ok after your surgery. That gives everyone else hope. I hope all goes well for you. Please come and visit more often. I will pray that Wed. has a good outcome.

Love, -Pam

[dianec]

Dear Jean — welcome back. I’m newly back to the board as well after a long absence, probably about the time you left.

I’m sorry to tell you, if you don’t already know, that Lisa passed a few weeks ago.

I also live in WA, in Redmond. Used to live on Whidbey Island until this past summer. My husband, Brad, passed from CCA in 2008. I recall that you, I, Lisa, and others were to meet for dinner a few years ago. I couldn’t make it. Wish I had.

I’m sorry you’re in the midst of these challenges again. Swedish is certainly one of the best centers. Brad was with Virginia Mason. Dr. Kozarek was his GI doc, and Dr. Picozzi his oncologist. I don’t know if this is an option for you, but Dr. Gores at Mayo is the best regarding CCA. I’m hopeful that your surgery this week will get you back on track. You deserve the best.

Jean, I live close enough to you that if you need assistance in any way, I can be there for you. My email is accessible on this board.

[pcl1029]

Hi,Jean,
I am a patient for 30 months with 2 resections with adjuvant chemo for 14 month.
You have disease free of CC for 3 1/2 years without adjuvant chemotherapy is a blessing from God considering the CC recurrence rate is >65%.
Treatment options for CC is more now than 3 or 4 years ago. Since you ask this board for insight and advise. Here is what I think you should consider if you allow me to do so.

1. Ask for a interventional radiologist consult to see whether you can have chemoembo along with RFA to burn the 1cm tumor off instead of having the surgery ; the combination of chemoembro and RFA is as effective as open resection in some study. Do this ASAP and you may ask the surgeon if he/she is an open -minded doctor. I did, and he sent me to have it done one time instead of open resection . The reason— After the procedure you may require to stay just overnight in the hospital or you can go home the same day and no side effects for me at all.
2. as in the last time you had before the CCA surgery done,you get a PET scan done to see whether the tumor has spread or not. If you can do a PET/CT scan before the surgery or the RFA treament for the same reason.
3. In case you will have the surgery,if possible ,request the surgeon to have the pathology lab to have your tissue block to test for biomarkers for chemo and molecularly targeted agents SENSITIVITY ;like the “Target Now “report done by Caris Life Science(800-901-5177),Because under the ASCO guideline and vision,molecularly targeted therapy will be their research and clinical practice.
and if you know your biomarkers and RNA genotypes;it may be helpful for more effective future treatment and less side effects.
You can read more on my suggestion under the experience chemotherapy forum (the use of biomarkers;ASCO new Vision;) and under radiation forum(untra sound,CTscan and Pet/CT..)and especially under the PETscan section for some of the insight)

God bless.

[Author]

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