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Dear Gail,

I am so very sorry for the loss of your sister, Karen. It’s never easy to lose those we love, especially to this horrific disease. You sound very strong and I hope, in time, beautiful memories of Karen, can bring a smile to your face and somewhat ease your pain.

Please know I am thinking of you and your family during this difficult time.

Peace,
Mary

Dear Suz,

I’m so sorry to hear of the death of your sister to this horrible disease. Your loss is so raw right now but I hope in time sweet, happy memories can bring a smile to your face when you think of your beloved sister.

I wish you peace.

Love & Hugs,
Mary

Hi Randi,

Great anniversary for you – you deserve continued best success!!! You are a beautiful person and I thank you for always uplifting us!!!

Peace & Love,
Mary

Hi All,

Personally I don’t know about Proton therapy but am aware of a place in New Jersey called ProCure – http://www.procure.com – that specializes in Proton therapy. It’s located in Somerset, NJ and also has offices inOklahoma, Seattle and Illinois. If I remember correctly, when I checked it out many months ago, I was not eligible because I had Stereotactic Body Radiation Therapy (SBRT).

A lot of the radiation oncologists that staff the NJ location have done residencies at Memorial Sloan, Mass General and other well known cancer hospitals.

Back in March 2013, I spoke to a surgeon at Memorial Sloan about Proton therapy and he told me it is a step up from radiations such as SBRT – much more precise in targeting the tumors. Memorial Sloan is suppose to be either building or acquiring a building in the NY area, by the hospital, to do Proton therapy. I think 2015 was the date he mentioned to me.

Mary

Marion,

I just want to thank you for your tireless work on behalf of those of us dealing with this beast of a disease.

I send blessings your way with hugs and my most profound gratitude for you and the other moderators.

Love & Peace,
Mary

Caroline,

Thank you so much for this post. I am on Cis/Gem and just finished my third treatment on Friday, 11/29. This is my week off then I’m back on for two Fridays starting 12/13. I am hoping to be able to get enough of this treatment in me to shrink the tumors.

My main side effects are swollen feet, ankles and legs. Even though I’m careful to elevate my legs the first two days after treatment, the swelling doesn’t seem to ever go away completely. It doesn’t hurt me but can be a little tender when I touch my feet or legs. I feel I can deal with it as long as the chemo is working. I am urinating ok so I don’t think it’s a kidney issue.

The other issue is my stomach being so bloated. That is very uncomfortable and makes it impossible to zip/button pants. I have been on a laxative/stool softener regimen for awhile due to constipation issues. The doctor did mention that my tumors that grew significantly are pressing against other organs in my abdomen area and can cause swelling. But it seems the bloating got worse after I started Gem/Cis 11/8. Again, I will deal with it if it helps the tumors shrink.

And then the fatigue – it can be overwhelming. But I will deal with all of this if the chemo helps me!

Some background info…I am 58 yrs old. I was 56 when I was diagnosed with adenocarcinoma unknown primary in 8/11. I had a tumor wrapped around my hepatic/celiac arteries and a tumor running along my portal vein. I had a few different chemos and traditional radiation. But then in February 2013, after my scheduled PET scan and MRI, the diagnosis changed to cholangiocarcinoma stage IV, because of the tumor found in my liver. So in March I met with a radiation oncologist at Sloan Kettering in NYC and in May started Stereostatic Body Radiation Therapy (SBRT). At that time I became jaundiced but they let me finish the five SBRT treatments and after that a metal stent (May 2013) was put in the bile duct in my liver and thankfully it worked to bring down my bilirubin and continues to do so as of today!!! So I was able to start chemo – Paclitaxel until it became ineffective last month (November 2013). That’s when I was told the tumors had grown significantly and there are two new, small tumors – one in my abdomen and one in my liver. So now I am on the Gem/Cis and hoping it helps.

Sorry for rambling on but I thought the background info would be helpful.

Love & Peace,
Mary

Thanks for this link Gavin. I shared it with my daughter who is my caregiver. I don’t know what I would do without her.

Peace & Love,
Mary