Topic: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Biliary Malignancies

http://penn-medicine-clinical-reports.b … nt-of.html

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Gavin, My mother has just been told that although her cancer has not spread outside of the liver, she has new tumors and the smaller ones she already had are growing.  She has one large tumor that was found in August of 2011 and that tumor has remained roughly the same size with the use of chemo and radiation.  Unfortunately, the doctor does not recommend additional chemo or radiation.  My mother will see a doctor here on Thursday to see if she is a candidate for radioembolization.  She had been going to MD Anderson until June and she was told they didn't recommend it for CC because they had not really had any success with it in CC patients.  Could you please tell me if you have an opinion about the procedure?

My mother is not ready to give up, but the doctors are telling us there is little more that can be done at this point.  Thank you for sharing your knowledge with others.  I don't know where to turn to help my mother.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Dear Summergirl,

I am sorry to hear this latest news about your mum and these tumours. Have you and your mum talked about seeking a further opinion or more even from other doctors regarding different chemo's or other treatments? I hear what you are saying about what they said to your mum at MD Anderson, and to be honest, I couldn't comment on that as I have no personal experience of this treatment as my dad never had it. Hopefully others will be able to chime in and share their thoughts and experiences of this.

I did a search for you here on the site and came up with this. I hope that some of the posts in this link will be of use and interest to you.

http://www.cholangiocarcinoma.org/punbb … 1796702500

I really wish that I could help some more here or offer some more insight on this to you right now. I can so understand your mum saying that she is not ready to give up and that is good to hear, so maybe seeking further opinions will help her right now? Please let us know what happens on Thursday from your mums meeting with the doctor and what is said. And please also know that we are here for you always, you are not alone.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Gavin,

Thank you so much for your reply.  I just wanted to let you know how it went on Thursday.  The doctor said my mother is a candidate for SIR-Sphere treatment and he feels like she should get a good response.  He said he has done this on 20 - 30 CC patients and some of those patients had responded well.  She has an appointment for the testing prior to the procedure on Wednesday and then  the procedure will be done on Thursday.  The doctor said she won't feel well for a few weeks afterwards, but then she should feel better.  I hope he is correct.  I will let you know how everything goes on Thursday.  Thanks so much for being here for us!

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

DeaR SUMMERGIRL, just want to wish your Mom the best of luck on her visit Thursday for the Sir-Sphere treatment. i will be praying for her to have complete success!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Summergirl....I also want to wish the best with the upcoming treatment. Please, keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Are there other diseases that this therapy can cure?

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Dear Fuuko, not sure about other diseases for treatments as our focus here is on cholangiocarsinoma however if you google Sir-sphere I am sure they would have a listing for you. Best of luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Hi Summergirl,

Thanks for letting us know how things went for your mum and that is great to hear that she is able to have the sir-spheres treatment. My fingers will be crossed for your mum and for the best possible outcome, and I hope that the treatment goes well. Please let us know how she gets on and tons of positive thoughts are coming your mums way.

Hugs to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Thanks to all of you for your thoughts and well wishes.  I appreciate it so much!  The doctor said the procedure went very well.  He put her on a steroid dose pack and said that would help her feel better for the first couple of weeks.  He stated she would probably begin to feel fatigued for two to three weeks after that though.  She has had no side effects so far and hopefully she will skip the fatigue.  She's a trooper. 

She'll have a CT Scan the second week of November and we'll know more at that time.  I will let you know the results as soon as we receive them.  Thank you again for sharing your experiences and ideas.  You are performing a great service.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Summergirl, thank you so very much for the update on your Mom. I am so very happy everything went well and lets pray and wish for a really good Scan in November. Yes, indeed, she is a real trooper!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

summergirl....wonderful to hear that your Mom has faired so well throughout the procedure and is recovering well.  Fingers are crossed for an excellent CT scan result.
Please, keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Just thought I would give you an update on my mother.  Unfortunately, the CT Scan showed more small tumors in the right lobe of the liver.  The doctor said it looked like the larger tumor had been "damaged" though.  My mother has not been the same since she finished the dose pack after the procedure.  She is very fatigued and nauseous every morning and sometimes throughout the day.  She has asked the oncologist if this is due to the cancer or the procedure and he says probable both.

The radiologist wanted to go ahead and do the procedure on the left lobe also, but she decided against it since she has been so sick and it doesn't appear to have been successful on the right lobe.  The oncologist told her to try to enjoy the time she has left.

My mother asked him how this would all progress and he told her she would continue to feel more and more fatigued.  She would like a more complete answer and I'm not sure who to ask.  I am guessing that the reason she has not experienced more symptoms in the past is because the cancer is just starting to spread in the right lobe.  Is this correct?

I am so confused and don't know what to tell her.  Do you have any suggestions?

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Dear Summergirl, IF your Mother has decided she is done with treatments there is nothing more to be done than to make sure she is comfortable. I would ask the ONC for something for Nausea and for pain. I would also ask him when he thinks you should call Hospice in as they do start way ahead of time in helping her to stay comfortable. Hospice has to be ordered by the ONC.
With that said you might want to get a 2nd opinion as maybe there are other options for her besides what she has been doing. When you feel comfortable and can agree with the ONC you will know it and he will guide you on what to do. If you want to know more now, please email me asking what you want to know and I will be happy to tell you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

Lainy, Thank you for your suggestions.  My mother will see the oncologist on Friday and we'll bring it up with him.  If she has other questions at that point that she'd like to ask you, I'll send you a note.

Re: Proton Radiotherapy for the Treatment of Upper Gastrointestinal and Bi

summergirl...Your Mom might want to ask her doctor for the names of palliative care and symptom management specialists in the community.  It is not end of life care rather, it focuses on all aspects of the disease and the progression of the disease. 
I am sending all my best wishes,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER