marions
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Lilian…If you are considering Boston I would contact Dr. Jensen at the Lahey Clinic, who is quite familiar with CC. And, definitely,I would make contact with a Radiation Oncologist, as Marylloyd has suggested. Others may also give you some names and share some of their experiences. Also, which chemotherapy treatment are you on? Have you had a recent scan?
Congratulations Suzanne…and I agree, you are entitled to receive these benefits. Would you be able to share with us anything you feel might have helped you along? Do you have any suggestions for others?
Thanks
MarionHello Celeste…as our JeffG had mentioned once: this cancer likes to play hop-scotch in our bodies. FOLFOX has been used by members of this site and it is encouraging to hear that you have had success with it, also. Definitely, I agree with your approach of gathering another opinion (or two). So, welcome to our little club and I am hoping for you to receive many responses to your questions,as possible. Although, none of us want to be here for the obvious reasons nevertheless, it is the greates community to be part of as all of us share a common goal.
Hugs to you,
Marionmarylloyd….it will be interesting to see as to how other physicans will approach this situation. I suppose that Tom and you are not in any hurry to make a decision. The stent replacement although, quite uncomfortable has not shown itself to be problematic, so far and I assume that there has been no timeline given as to when this could change. I would love to see Tom’s case being evaluated by as many experienced CC physicians as posssible simply because, as you have mentioned, what will they compare it to? Has there been someone else in a similar situation? Most of all though, I am so very happy for you and Tom for the great reports, and his general wellbeing with this cancer. This will not be an easy decision to make but, seems as if you are not in a hurry and therefore have plenty of time to hear out the opinions of other experts.
Hugs
MarionDavid…I have some of the older bracelets left. If you send me an e-mail with your address I will mail some to you, also.
Angela….so glad that the US Office is reliable. You are so very welcome, and I am happy to know to have made your Aunt and family happy.
I will make sure for your offer to be helping out with the Foundation to get to the right place. Thanks for being so kind. Please, feel free to contact my per personal e-mail address should you not receive a response within the next 2 weeks.
Hugs
MarionTom….my husband had similar complaints post-surgery. Pain seemed to be radiating from the site of the resection in to his back, abdomen, and upper legs. We had been informed of the invasive nature of this surgery (and, that is saying it lightly), and were not prepared for the following lengthy recovery. It took time, and realizing you are just one months in to your recovery period I assume for you to be feeling much better as time goes on. Other members may also want to share some of their own experiences with you.
Hugs
MarionHello Tom…..Lainy has said it so well. Welcome, and sure wish we could meet under different circumstances however, so glad for you to have found us. Again, welcome and I am looking forward to many discussions including, you and the wonderful members on this site.
Hugs
MarionTiffany…Although, you have already received a wonderful welcome from the great members of this site I would also like to chime in by extending my warmest wishes to you. If I might as, where are you being treated, presently? Also, I assume for you to have had several opinions on which the current protocol was based on. I am so glad for you to have found us and again, the warmest welcome to you.
Hugs
Marionvincent…as always, you and your siblings are so on top of it. All of you are doing a fantastic job of tending to your Mom.Hoping to hear some good news on Monday.
Hugs
Mariongk….have recent blood test been done, also? Elevating the legs and decreasing the salt intake should show some improvement. Have you noticed a difference when your Dad does just that? Is the water retention in his legs only,or do you notice it anywhere else on his body? If you do not see an improvement within the next day or so, I would call the onoclogist, again.
Sending tons of good wishes, and please, stay in touch.
MarionOh David….I don’t mean to say that only our bracelets should be worn. It is a very personal expression, and wearing a bracelet of your choice does not demean the value of the Cholangiocarcionoma bracelets. I am happy for you to have found something to your liking. I am sure for Stacie to be announcing the arrival of the new bracelets.
Hugs
Marion
