jeffg

Pauline… I had external beam to the liver with mets to both lungs. It had to be approve as pallative treatment due to uncontrolled pain. Only other thing my Oncologist won’t do chemo and radiation at the same time as it creates to much havoc to the immune system. I would give Wayne, above your post a call and ask for doctor Kennedy’s contact information. They just may have an answer for you. I just don’t recall it ever being mentioned about SIR-Spheres either way if had lung mets. I would think If I had 3D-IMRT with lung mets why not SIR-Spheres.
God Bless,
Jeff G.

Hi Liz, Congratulations with graduating from college! Thanks for sharing about your Mom. It’s obvious you and your Mother had a loving bond. The Mommy Journal is just a nice idea. Hopefully, it will allow you to process your grief a little further. Don’t feel guilty about your Dad living alone and having to pay bills; like your Mother said “life will go on”. The only thing I would say is if any of those bills might be college related it’s not uncommon for students to start picking up at least part of the tab after graduating and in to the work force. Maybe that does’nt apply to you. I just feel your Mother would be so proud of you and I’m sure she is watching and cheering happily from above of all your accomplishments. When it comes time for marriage and having children I think you will sense your Mother’s presence in some way.
Liz, I think that leaving my loved ones and not knowing if they will be safe is what concerns me the most. I have already had a Family meeting with my wife, grown up daughter and son. I told them the same thing your Mom told you” Life will go on”. I have fortunately been fighting this disease for 9 years althought it is getting tougher as each month and treatment goes on. I’ll keep my hope and faith for a remission or maybe a miracle cure and I’ll encourage others to do the same. Great strides scientifically have been surfacing. Like polio and smallpox we’ll get there one day; unfortunately many of us won’t be able to fight long enough to see that day. I feel comfortable and free already for some reason. But if I can stay around and be self sufficient and be with my loving family a little longer that would be nice.
Liz I’m glad you posted and shared. I hope you you are dealing with your grief, it sounds as though you are. It can take a while but eventually we keep recalling the happy memories and get past the end of life experience.

Wish you the Best Liz! Your future will be what you want it to be!
God Bless,
Jeff G.
P.S. As far as your friends and their disrespect for their Mother’s; I can understand your anger. Just keep yourself empowered. You have gained and have learned the hard way of the meaning of unconditional Love and also the wisdom to know what individual responsibility is all about.

Tanoland… You might ask doctor if there is something else she can take for pain as some people respond differently to different pain meds. I actually take Morphine slow release 4 times daily and Hydromorphone every 4 hours if needed for break through pain. Might help? It could cause drowsiness as with any pain med but I seem to do just fine with this set up. I’m glad to see you have a large supportive family to help each other through this trying time.
God Bless,
Jeff G.

Tanoland… I’m glad to hear that your sister has started chemo. I’m sorry to hear that it is spreading so fast. I really hope this chemo will slow things down for her. I can imagine how scared she is right now and you as well. I know it is hard to be positive and have hope. Like most of us ,hope is the one thing we have to hold on to. We have to remain positive and pray and hope for the best outcome possible. Tanoland, hope is about all any of us have to hold on to with this disease. Your going to have to be strong my friend and love and support Shirley as much as you possibally can. Only time will tell now. I wish I had a magic wand. Please tell Shirley she has all our love and prayers of support with a whole bunch of hope things will turn around for her.

God Bless You Both!
Jeff G.

Joyce— Like I said throughout my opinion it is an individual choice and I respect that. I feel there are many factors and reasons why some choose to fore-go treatments and go for quality til the end. I surely weren’t attacking Robynhar for her husband’s choice. My first few years started out the same way as her husband and then I had a change of heart/purpose. I just feel there is such an array of possiblilities in progress and I just differ in my opinion about chemo not being of any help. It’s like the flu, smallpox, any other historical epedemics you can think of, someone has to find the right combination and I would just like to contribute as much as I possibally can until a miracle happens or my time to move on comes around. I am happy that Robynhar and her husband built everlasting memories and again I respect their right for making their individual choice in dealing with this cruel disease. God’s love and support goes out to her and all she has endured.

God Bless,
Jeff G.
P.S. I think we are all mature enough to be able to agree to disagree. At least I feel that way.

Rjody… Try to stay away from can goods or other products with high sodium content. Also table salt. As already mentioned diuretic can be prescribe to help. I take one tablet of Furosemide in the morning. But I don’t have fluid build up as you described of your loved one. If to much fluid it may have to be drained. There is side effects involved with Furosemide. Usually dizziness, the most common but there are others. Another important one is to watch your potassium levels. Your docotor or Pharmacist can explain others. Normally very well tolerated.
Jeff G.

Hi Robynhar…. I’m sorry that you feel chemo and the Oncology world has nothing to offer. That is your opinion that you are entiled too. I just can’t believe your doctor says he had nothing more to offer. These other chemos for other types of cancers have shown very good results and are still in the pioneer stage. My opinion is that Oncology and surgeons have been making quite an impact in dealing with CC. I have no doubt in my mind that I would not be on this earth as today if it weren’t for great professional surgeons and super oncologists. I have not been given no false promises and believe my life has surely been extended due to the persistance of my self and the willingness of my oncologist to at least try different types of chemo of which I have seen with my own eyes. Maybe I won’t live a full life but I’ve enjoyed the last nine years. There are new innovative techniques and drugs being discovered and fine tuned each and every day. Statistics are always behind times. The only current statistics is the number of people that are born or die and then that is only accurate if it was reported. I look forward to living and loving those dear to me and if it means trying something different or new then so be it. Some 0ne told me once,” That the Lord will help those who are willing to help themselves” I guess I and alot of others are willing to do that. Another more non -bibical saying “no pain no gain”. As long as I continue to see with my own eyes my own scans and my own blood work, and my own face in the mirror, and hear myself snoring awakening myself, I will press on with my path of trying chemo or radiation or some new invention that kills cancer cells. That is what I prefer to do. I may not have any bone marrow left in my body when I’m finished or maybe I will. It was certainly an individual choice of howyour husband chose to deal with this CC, but I personally want to give it a whirl and keep searching for something that will fight this disease where does it go from there if some one doesn’t? I ask my self, how would we be able to see at night without light or go on vacations using modern technology if some one didn’t trial and error. I guess we all have opinions and choose different paths. This post is just my opinion. Everyone has one and that again is something I respect as well. I am happy that you had a great summer vacation and spent quality time togeter. I wish you the best. I’m am truley soory to hear of your bad experience with hospice as well. My true sympathy goes out to you for your loss as well, but I really have to say, many others on this site are really choosing to be positive and battle this disease to extend life or possibally hit a cure. We have hope. You made some points about money and research that were understood. That’s why we have Organizations such as Cholangiocarcinoma.Org rising to the challenge to intensify public and political awareness and working on obtaining research grants and raising funds where possible. They are making a huge difference although a lot of us don’t see what is going on behind this web site. Their and our work will benefit maybe one of us or at least get a head start for the future. I apologize if I have over spoken but I personally have hope and want to try if not for myself for others as well. Together we can change those outdated statistics. I think we have a real head start in this arena already.

God Bless,
Jeff G.