ronidinkes
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http://pathology2.jhu.edu/liver/geschwind.cfm
he offers radiation ablation and many other options. please check him out.
Dear Lulu,
I feel your pain, and started my journey in August 2010. Make sure she goes to a major medical center and gets treatment/surgery as soon as possible if she is a candidate. Your story sounds awefully similiar to my own. I am always here if you want to talk.
ronidinkes@yahoo.com or you can find me on facebook.
Sending many hugs your way.
roniDear Linda,
I can tell you, when I first heard stage 4, I felt like I could not breathe, like time stopped for a moment and my only response was tears.
It was 5 days after my mother’s whipple, and we thought we got it all, but it did show up in 2 out of 27 lymph nodes taken.
Mom is still here today, she did try radiation, and did 2 weeks of chemo, despite the fact she really did not want to do anything. We live day to day, enjoying each moment. I do not think my mother will have any other treatments she is less than 100 pounds, and just wants to enjoy the rest of her life without poison in her body, I have learned to respect that, although not always easy….if you ever need to talk my email is ronidinkes@yahoo.com
stay in touch, you are not alone, and I thank g-d for this website daily.
Many Hugs,
RoniI would into clnical trials outside the USA, and even some in the USA. Keeping you my thoughts and prayers.
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.
roniI would see if you can get a hopsital transfer to Mayo or another major CC center, and they can transport him safely. keep me posted.
Hugs,
ronidinkes@yahoo.comI am living the same up and downs day to day, with regard to this cancer and my mother. We are hear for you always, if you need anything let me know. My thought, prayers, and much love are sent your way and to your dad.
Many hugs,
ronidinkes@yahoo.comI am so very sorry to hear about your loss, My love and prayers go out to you and your family during this very difficult time. If you ever need to talk we are here to listen.
Many hugs sent your way.
Warm Regards,
RoniI have heard soranafib is really good, used in europe more often then the USA. good luck, my thoughts and prayers are with you.
hugs,
roniI am so sorry to hear of your loss, my daughter Hannah, age 10, is the same way, she told me nana will always live in our hearts and every night she will be with the stars shining down on us…. guiding us through the darkness. Children have such a special way seeing the sunshine through the rain. Sending many hugs and tons of love. If you need anything please let me know what if anything I can do.
Hugs,
RoniThank you to everyone for you being there, listening to me, and for your generous support, I am a very lucky lady to have found this group, I am forever thankful.
hi alison,
if there is anything you need please feel free to contact me at ronidinkes@yahoo.com orhttp://www.hopkinsmedicine.org/otolaryngology/our_team/faculty/dinkes.html
we are all here to listen and help you the best we can. sending much love your way.
hello rudy,
my mother presented the same way with horrible itching. she had her whipple at johns hopkins within 2 weeks of the ercp. timing is the key with any disease especially CC. keep me posted on how you are feeling and if you need any help at hopkins please contact me @ ronidinkes@yahoo.com, on facebook or at work.http://www.hopkinsmedicine.org/otolaryngology/our_team/faculty/dinkes.html
sending many hugs your way.
-r
