Mother has lymph node recurrence after whipple
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Dear Alex.
My mom had the whipple with portal vein recontruction august 2010
She showed a recurrance as well, in December 2010. She has just tried radiation 20 days , and xlodia for 2 weeks, she got very ill. she is now below 100 pounds and trying to gain weight. we take it day to day. she has scan in may, and blood work, but she is not going to find out the results, the physician will talk to me. I want to keep her in positive spirits, mind over matter. She made it to my son’s bar mitzvah last weekend, and we are so very thankful for that milestone. keep me posted.
roniThanks for sharing this with us Alex. It is good to hear that your mum will be doing her chemo close to home and I wish her every success with it. Please let us all know how it goes and remember that we ware wll here for you.
Best wishes to you and your mum,
Gavin
Alex….it makes perfect sense to be treated at home. Doesn’t is feel good to know for an expert opinion to be validated by another? Good luck with your Mom’s first chemo session. Remember, the CCF members are full of knowledge and very willing to pass on what they have learned. Please, don’t hesitate to reach to all out if needed. And, please keep us posted.
All my best wishes,
MarionAlex
It’s great to hear that your Mom is as ‘tough as nails’ and that mets has occurred in only one lymph node.Attitude is everything when it comes to defeating cancer……..Gerry
Hi Marion/all, quick update: my mother starts Gem/Cis combo therapy next week. We consulted with UCLA and UCSF oncology and both agreed that was the right treatment. She is doing the chemo close to home (Monterey), and will meet with Dr. Ko at UCSF later int he month so he can provide additional consultation as she progresses.
We’re all very optimistic (he CA19 marker is 95, and the recurrence was visible only in 1 lymph node), and she is tough as nails… thanks again for continued support!
Alex….did your Mom try to make an appointment with Dr. Venook at UCSF or anyone else within the oncology group?
Hi everyone, so my mother is having trouble getting in to see Dr. Ko at UCSF – he is booked until end of April. She really needs to start chemo sooner than that, and so I was wondering if anyone had a great oncologist to recommend in Northern California. She lives in Monterey. Thanks!
AlexThats a great way to think of it Malc! Yes, my mom is in a good stage right now, and so we’re blessed… wishing you continued good health.
Hi Alex
I’m a whipplee (is that a word!) from Jan 2010 so in the same club as your mum but without the resection – tough route to have to take and hard for those like yourself too.
The ‘stages’ thing can be as scary as the ‘return’ thing from another recent post.
Maybe an alternative stages thing is a ‘quality of life stages’. I’m in a good stage – Stage 1 – and hope your mum is too.
Malc
Hi Alex,
Welcome to the site. Sorry that you had to find us allbut glad that you have joined as you will get a load of support and help from us all. Thank you for sharing your mums story with us and that is quite some journey that she has been on. I know what you mean about feeling scared and I guess that is very common. But we are all here for you and know what you are going through so you are not going throgh this alone.
Keep coming back here and post as much as you want. And should you feel like venting then go for it. And if you have any questions please just ask away and we will all do what we can to help. Looking forward to hearing more from you.
My best wishes to you and your mum,
Gavin
Alex….I would like to follow Lainy and welcome you to our site. I am happy to that your Mom will be receiving her care at the UCSF Helen Diller Family Comprehensive Cancer Center. She will be in good hands with Dr. Ko. Good luck and please, stay in touch.
All my best wishes,
MarionAlex, good to read everything you wrote. You are a great advocate and you already have everything going as it should. Gem/Cis seems to be the cocktail of choice around here. Is Mom in San Francisco? That is my favorite city. Love Aliotos on the Wharf and that is a cousin of my husband’s, who passed in December fro CC. It was one of our best trips about 3 months before he was diagnosed. I am wishing all the luck in the world to your Mom on her Chemo.
Lainy, thanks for the kind welcome, and positive thoughts! I’ve already spent a lot of time on this site, and it’s just such a great resource – for information, and encouragement.
The oncologist at UCLA said my mother was considered stage IV because any time it is a postsurgery recurrence, and any lymph node is involved that is automatically stage IV. He also said that the chance that other lymph nodes are infected are ‘astronomically’ high, and just not yet visible.
The positive side of the story was that the visible tumor is small everything else in her MRI looked clean (stomach, liver, etc). He also said that if she responded well to the initial chemo treatment (gemzar/cisplatin combo), he thought radiation would be a good second step…
We’re getting another opinion at UCSF because it is closer to home for my mother, and I will share anything new I learn.
Thanks again for the positive encouragement.
AlexDear Alex, welcome to our wonderful family but sorry you had to join us. First of all Congratulations on your Mother being a Whipple survivor, that in itself makes her a brave and couragous lady. We are not doctors but I am wondering if the doctor told you that she is Stage IV with only 1 Node involved. We have members who were diagnosed with Stage IV and are still doing very well even after a couple of years. If you are very satisfied with the Oncologist that is great but if not you are entitled to other opinions. We do know the scare with this but honestly once a game plan is in place the scare will turn to fight and you have already said you will fight for her and with her. Read up as much as you can on CC as knowledge is our most powerful tool to fight CC. Also at the top of the page is a search button and you can type anything in there and see the many posts that will appear on that subject. She is lucky to have her son as her advocate. Now, I am not sure if this can be done because of where the tumor is located but you might ask the ONC about Cyber Knife. I do know that 2cm qualifies as it has to be under 7cm. Swnding best wishes your way and please keep us posted.
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