Update on wife’s CC
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Dear Frank,
I am so sorry for the loss of your wife. Sending prayers for peace, comfort and strength to get through this difficult time.
MelindaDear Frank, I am so very sorry about Heidi. Please accept my humble condolences. The following poem could be from Heidi to you:
If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.Dear Frank,
I am so sorry to learn that Heidi has passed away. You have my sincere sympathy. My husband was 62 when he passed and I thought I lost him too soon, but Heidi was definitely way to young. I too keep hoping that some day there will be an end to all of this. Although there does seem to be more awareness, we are still losing way too many good people to this disease.
Take care. Keep her with you, close to your heart and in your memories of all the good times.
Hugs,
DarlaDear Frank,
I am very sorry . This disease is terrible, but especially so when it takes loved ones who are so young. Please know that we are here for you. Although I am very fortunate with how Mom is doing, many of the people here have lost loved ones as well.
I wish you healing and peace in the future.
Take care of yourself,
CatherineOne last post…
My wife, Heidi, lost the fight against CC on April 21, 2016. The Keytruda treatment was not effective and she went downhill fast.
She was only 44 and my heart is broken. I pray that someday soon they will find a way to put an end to this horrific cancer.
Frank, Hello and sorry to meet this way. I am glad your wife is responding to treatment.
I would like to ask, where you are being treated. I live in the St. Louis area (Wood River, IL) and being treat at Barnes/Siteman Center and Dr. Rama Suresh is my oncologist. God, 2 strangers and Dr. Chapman at Barnes saved my life 61/2 years ago and now we are trusting in them again. My team of doctors are the most compassionate, knowledgeable and fighting doctors you could want in this battle!!
I keep my story posted at http://www.catherinedunnagan.com There is a video I made for Barnes on there. Would love to talk some time!
Lots of prayers for your wife-CathyHi Frank,
I also have mets to my lungs and did gem/cis for about 6 months with stable disease. I continued on the gem/cis regimen until the toxicity was too much to handle. I have severe neuropathy in my feet, lower legs and hands. I also have some hearing damage. That was five years ago. Thanks to a clinical trial and a new immunotherapy approach , I am doing great today. I agree with Marion that I am sure they will want to stick to this treatment for as long as it is working. Keep your eye open for the targeted therapies for any results of the molecular testing for a plan B. Hang in there and give your wife a hug for me!
Melinda
Molecular testing has been already been done on the large tumor (nothing on the smaller tumors in the liver and nothing done in the lungs) and the oncologist says she has nothing remarkable, but it could be become useful in the future.
Frank……your wife appears to be responding well to the current treatment. I am especially happy to hear of the disappearing pain issue. With this type of response, it is unlikely for anyone to suggest moving to another protocol, but as in all cases, one would want this confirmed by other specialists.
CCA likes to metastasize to the lungs. Perhaps you would want to discuss with the oncologist validation of the suspected cancerous nodules.
On another note: has she had a biopsy followed by molecular testing?
You may also want to familiarize yourself with the below:
http://cholangiocarcinoma.org/new-upcoming-webinar-using-patients-own-immune-system-to-knock-out-cancer-adoptive-cell-therapy/Hoping for others to chime in and share their thoughts with us as well.
Hugs,
MarionMy wife just finished 3 cycles of Gem/Cis chemo and we went in for new scans after her Stage IV CC diagnosis on 24 Sep 15. She didn’t even lose her hair , but the fatigue is substantial. A chest CT was done to take a look at the spots that were noticed in her lungs and an MRI to look at the liver.
The chest CT showed no change to the spots in the lungs. I’m beginning to wonder if these spots are actually mets since they have never been biopsied nor has a PET scan ever been done. There are only a few and the largest is under 1.5 cm. The doc did notice 2 spots in her breast tissue that had gotten bigger and this worried him so we were sent down to get them checked out. The breast spots were just cysts (YAY!)
The MRI showed that her large duct tumor (1.5×4.8 cm) in the left lobe has not gotten bigger nor smaller, but it is a more “liquid state.” Doc says this is a good thing as it means the tumor is dying. A couple of the mets in the liver had grown ever so slightly but they are also getting my liquid looking.
My wife’s abdominal pain has completely disappeared, which was quite severe (even on Hydrocodone and Tramadol) and keeping her from sleeping, after only a single round of chemo. She hasn’t taken a pain killer in weeks now.
I’m unsure what we should do now. The oncologist says liver surgery is not an option because there are spots in the lungs. He wants to continue the chemo. We are at Barnes-Jewish in St Louis.
Any suggestions on what we should do?
Her liver function tests are all in the “perfect” range and have been since diagnosis.
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