more bad news
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Dear Donna, there is no time like now than for Jim to be surrounded by those he loves most. Make some new memories and spend the time together reviewing old memories. Our thoughts and prayers travel out to you and yours!
Donna,
this can be a good time for you and Jim,without the pressure and stress,and its a time to have some nice times with each other and family and friends without worrying about treatments etc.
I have been through this too JanetDonna9,
Hang in there! (and please remember to take care of the CAREGIVER!) That would be you!
I know things are hectic for you and Jim right now. Please know that you, Jim and your family are in my thoughts and prayers. I am praying for you to have strength, peace of mind and for Jim’s pain to subside. Hospice is a wonderful organization and they offer so many options for pallative care.
Hugs and prayers,
PamSorry I didn’t update sooner. Jim saw the oncologist last wed. The decision was made to stop chemo. The davanat was not an option because it is given as first line drug. Dr had heard of it, so that was incouraging. We will set up with hospice in the weeks ahead. Plan is to treat the symptom as needed.
We moved yesterday to our daughters home with her family. Jim seems to have fractured a rib somehow and he is very uncomfortable (go figure)looks like a trip to the Dr. again. In the mean time we will start the pain meds again.
There is so much to worry about, we are trying to take the immediate things and setting th rest aside. I will keep you imformed as to how he is weathering the new plan.Ashley, you are too funny..But fear not, I also have a binder. I will try finding some info on Davanat Before our appt wednesday. Just when you feel beat someone give you a thread of hope. thanks. Donna in Mass
Hi Donna,
Are you near Boston?? there is a drug called Davanat that was used with 5-FU in trials a few years ago. It is manufactured by Pro pharmaceuticals in Newton Mass and your mention of Boston is why it is coming to mind. This company will work with you and your husband’s doctor to see if he can be on this drug. ( The CEO of the company left me a vm last summer when I inquired about it and this is what he told me). (However, my mother did not end up using it.) it supposedly allows delivery of 5-FU in greater amounts
( normally toxic to good cells) but davanat coats the chemo so the good cells are not affected. Not a cure, but it may be an option if your husband/doc is still willing to try another chemo.Perhaps you could ask your oncologist about this drug at your meeting tomorrow? If you want to email me at home I may have more info on this for you in my CC binder. ( yes, I have a binder!)
Ashley in CT
I’m so, so sorry for your unwelcome news, Donna. Please don’t give up hope. Take a rest & then come back fighting again. Good luck with your next appointment. I’ll be sending out positive thoughts to you both.
thank you all for your replies. In past meetings, Our oncologist said this is the only chemo he would offer at this time because of the fast spreading. We have an appt on Wednesday to recap the recent results. We will never give up trying. Jim is opened to trying anything available that will be helpful. We have talked about palliative care and Jim is okay with that if thats what the Onc suggest. However we have great respect for our PCP. I have been his medical assistant for 29 years. He is a friend as well as our pcp. He keeps in contact with our oncologist weekly. Our pcp has bent over for us to get the best care available in massachusetts. Your right Magic, our pcp has the whole picture for 3 generations. Jims surgery was done as Mass General Hospital in Boston. The whipple was her specialty and she did what she could. She was very optimistic. But this mean disease has its own mind. I would be greatful to have jim plateau at this stage for awhile. I guess we will see. Thank you all again. I will keep you up to date after our appt. Donna
I understand exactly what your husband meant and I think it good to have the input of your local doctor who may be able to see the whole picture.Talk to your oncologist and get a realistic picture of what can be done and let Jim make the decision.Strangely people can sometimes improve and plateau for a while with palliative treatment particularly when chemo hasnt been working that well.
JanetDonna:
So sorry to hear that news, but if I were you I would seek a second opinoin. Find a doctor that has had experience with CC or have his records sent to Mayo Clinic.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
Hi Donna and so sorry about the news. Please do not give up hope. There may be another chemo cocktail Tom can try. You also might consider a second opinion depending on what the ONC says. We have NEVER had the Primary Care tell us anything, it has always been the ONC. Don’t give up yet, there may still be something to try.
Donna, I am so sorry to hear the news. I have been on several different treatments – is Gemar the only one that Jim has been on? The current treatment that I am on is
Epirubicin/Cisplatin/5-FU
and my lung tumors haven’t grown since October.
Jim had his CT scan today. The news was not very good. All tumors shown last time have doubled and new tumors in another lobe and several more lymph nodes. We see the oncologist on Wednesday. Hopefully he will still have more
treatment for Jim. He has been on gemzar for 3 cycles. His primary care gave us the results today and feels we should stop the chemo. He suggested starting with hospice. Jim seems to be handeling it well. He said a funny thing, That it is almost a relief from his anxiety and now he can handle what is important to him.
Numb is all I feel right now. Very sad and will miss my best friend. thanks for the venting time, Donna
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