ronidinkes
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thank you so much for your story, mom mother was recently told she has < than 1 year to live and she and i are in a DEEP depression with whole ordeal. she is 65 they removed the whole tumor with the whipple, but 2 out of 27 lymph noted returned positive making it a stage 4 chaos. my mother’s name is susan, maybe if she heard from someone given the same diagnosis who is still alive and positive it might help her. susan dinkes 516-764-1647 or sbd50@aol.com
or you can find me on faceook roni dinkesthank you so very much for your story, it give me hope!!!!!!
Stents are only temporary, they migrate and they can become infected.
I would have a EUS done as well.
My mother had a negative PET scan, negative biopsies, and it still turned out to cholangiocarcinoma and to top it off they removed 27 lymph nodes, and 2 came back positive to it was stage 4…..
I would find a major medical center and get in touch with a surgeon, because whether this is benign or cancer, she cannot live like this.
Best of luck and stay in touch, your mother is stronger than you think!!!!
Hugs,
Roni DinkesI grew up with Elena and she is a wonderful woman. She set the world record for Yoga in Central Park this year!
This is the DVD I was talking about:
http://www.amazon.com/Element-Am-PM-Yoga-Beginners/dp/B001AYWY68/ref=sr_1_2?ie=UTF8&s=dvd&qid=1284921099&sr=8-2i thought i would poste this since you like yoga…..
enjoyI love yoga when I get a chance to do it.
My girlfriend Elena Brower has a DVD on amazon AM/PM yoga, I just do the AM when I can find the time. I think all the breathing and 02 makes me feel better. My mother is 65 and was just diagnosed at JHH August 2010. My 10 year old daughter has been my strength! If you need anything please let me know. I am on facebook.
roni dinkes
have a good day and enjoy the sunshine today!wwemerald,
I also live in maryland have a 10 and 12 year old, if there is anything you need I am in owings mills.
My mother had her whipple 8-1 at Hopkins, and she is considering leary of the Gem/Cisp combo, I am trying to convince her to try it, if not for me for her grandkids…..she has reported back pain recently, I am wondering if her stage 4 has spread to her spine or if it is adhesions etc…
The whole thing scares me…but if you need anything find me on facebook and let me know what I can do help you.
Respectfully,
Roni DinkesI hate to say welcome to this group, but we are a special group, who support one another no matter what, and we are here 24/7.
I am also a caregiver and find the whole journey difficult to comprehend shocking, and I just want to fix everything, make things all better for my mother, and especially want this whole thing to vanish and have life back to normal.
I am not sure what the right course of therapy is? I would check under the current clinical trials and see what he may qualify for.
There is nothing I can say to make this any easier for your or your family suffering at this time, other than we are here for you.
Stay in touch, talk to us, we are all listening and are in similar positions. There is strength in numbers!!!!!!!!!!!!!!!!!!!
Sending many hugs to your family.
Hugs,
Roni
ronidinkes@yahoo.comI usually go to Arizona in march for the AAS conference, last year I stayed in Paradise Valley!
Should I go this year, we should meet for a drink and some laughs
I made all this food for my immediate family of 4! Sorta lost my mind, I passed over Rosh Hoshana, so I pepped up for this one. I took my soup out of the freezer, because I always cook too much!
Defrost the soup, it warms the soul, and chicken soup is easy to get down and makes everyone feel good…
Sending many many hugs your way!
I feel very lucky to have found this community because otherwise I would feel all alone in the chaos.
ronidinkes@yahoo.com
or anyone can find me on facebook! yes I love facebook!!!!Even though my mother is 100 pounds now, she is one vivacious, spiritied, feisty, gregarious, stubborn, tough woman!
My mother lost her mother when she was 12 years old at sleep away camp, which is why she is so very tough….
My grandmother Riva, was diagnosed, when my mother was 2 with metastatic breast cancer, and my mother had no idea until she was 9 years old.
I only wish my mother had her mother’s fight, my grandmother fought 10 years…..and died in her early 40’s.
The Hopkins incident in a nutshel, an 84 year old woman was an inpatient on the 8th floor. Her son age 50, came up from VA to see her. The son was not happy with the progession of his mother’s recovery, and became emotionally disturbed by the diagnosis and progress.
He then pulled a gun on the physician, who was immediately brought to the OR, and then the son locked himself inside his mother’s room, shot his mother in her hospital bed, and then himself.
The physician was shot in the upper abdomen, spent the day in the OR, but he will recover, thank g-d.
I took today off, to cook the jewish holiday, table set, chicken cooked, soup warming, potato pudding done, noodle kugel done, fresh fruit cut, wine, cookies, brownies, shabbot candles and the kitchen is cleaned! SO proud of myself.
went to acupuncture yesterday felt much better and calmer afterwords, being forced to rest and not move or think for 30 minutes reallly centers you!
Spoke with my mother last night, after acupuncture and 2 – clonopin, much better conversation.
My whole family could be a TV sit-com!
Everyone have a great friday!
Thanks Marion,
Thanks for listening to me rant….She has an appt. monday at memorial sloan kettering with dr. zoe goldberg who works closely with dr. ghassan abou-alfa who is conducting a clinical research trial there. Gemcitabine & cisplatin plus sorafenib.
My conversation with my mother did not go well this morning, and I feel like I am talking to a wall.
I begged her to go to her appt. monday with an open mind, and realize this may not be the end, to which I was scolded with “Roni, I will die of this disease and you need to learn to cope with that reality”
To which I took an ativan and went about my day and attended to my patients.
I work at hopkins, so after the shooting which shocked everyone, I called her, told her I was alright, she said, why would’nt you be alright, i said you did not hear about the shooting because you are so wrapped up right now, you need to open your eyes and LIVE because right now you are alive!
Needless to say she is still angry with me. She says i cannot force her to do anything with her body.
My brother is taking her to the chemo/radiation consultation on monday.
I also left word for Dr. Goldberg to call Dr. Abou-Alfa after her appt. to see if she is a candidate for the clinical trial. i can only do so much.
I took 30 minutes today to myself and did acupunture because I feel like I am losing my mind. Too much, too fast. not to mention i turn 40… 10-15, and am totally not excited about that.
got two kiddo to tend to, stay in touch, my email is ronidinkes@yahoo.com or rdinkes@jhmi.edu
good-night
-rDr. Ghassan Abou-Alfo @ 212-639-3112 Memorial Sloan kettering has a clinical research study Protocol: 0029
A Phase II study of Gemcitabine & Cisplatin plus Sorafenib in Patients with advance Billiary Tract Carcinomas Naive to Systemic Therapy.
I spoke with him today, he was lovely, and they are still recruiting.
Good Luck
