Haven’t been here in a while . . . . Update on me.
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This week I was able to do round 2 of my treatment. Monday was gemzar and erbitux. Tuesday was oxaliplatin. My onc decreased my doses by 20% and changed my erbitux from every two weeks to weekly to decrease the dose. He was a little baffled that I got such bad diarrhea from the chemo, but we all react differently. He was also a little mad at me that I didn’t call him before I ended up in the ER needing fluids. I’m hoping that I can prevent getting so sick this round since now I know how it affects me. I got the lovely “acne-like” rash from the erbitux. I think other people have probably gotten it worse, but at 32 it was the worst breakout I have EVER had. I was blessed with a nice, freckley complextion. I also used Nerium on my face and I think that it really helped keep the rash at bay. The nurses said that the rash gets better. No major hair loss yet, maybe a little thinning. I finally sent my hair I cut off before I started chemo into Pantene beautiful lengths. 9 1/2 inches! I figured if my hair was going to thin I didn’t want to wash long strands down the drain. Making the most out of a crappy situation. Hopefully it helps someone who has to lose all their hair. This post is a little rambly, I thank the dexamethasone for that.
All in all doing better and hoping for a good end to my week.
Shari
Hi Shari:
We all need a pity party once in a while. Dare I say it? We deserve it. The key is to remember that parties are temporary and no matter how good they feel, they eventually become tiresome and we have to – want to – go back to work after a bit. So have your party! Put on your ugly robe, let your mascara run down your face, don’t comb your hair, and feel good and sorry for yourself! Then go look in the mirror, remind yourself that no one should run around with a lampshade on their head all the time, and get back to work!
You can do it! We can help!
Gigi
I’m taking it as a day by day thing with work. They are really understanding. I want to do anything to put cancer behind me, but I want to function too. My plan is to talk to my onc before my next round. Thanks Lainy.
Dear Shari, if you don’t feel better next week I would inform the ONC. Perhaps there are some other things he can give you. Did you take off work? Sure hope you start feeling better!
Hi all,
Thanks for all the suggestions. I have had some of the cold sensitivity, but its not to bad. The worst has been the shits, literally, and the nausea. I have the worst cramps and just feel drained. With my last chemos I could at least work, this time I am so tired all I want to do is sleep. I have been taking my zofran and trying to stay hydrated. I hope by next week I will have some spunk back. Laying around isn’t my strong suit.
Shari
Hi Shari,
I am sorry you have been thrown another obstacle. I agree with what others have said about the cold sensation and and neuropathy, but it does get better!
This is the best place to let it out because we truly understand so shout it out! And if you want to talk to some one on the phone please call me at 330-903-6868.
Hugs
LisaPlease, continue to blow them away with your knowledge, dear Renee. BTW, I have given up on the accent. Please forgive me – but I have to stick to the most rudimental of application – it is over my head.
In re: to physicians visiting our website – many do so. I also know of numerous doctors referring their patients to this site.
I strongly believe that “more is better” not necessarily for treatment, but definitely for a second, professional opinion hopefully concurring with the recommended approach. An oncologist treating hundreds of patients or a surgeon performing hundreds of biliary surgeries is bound to have a well rounded perspective on this disease. And, these physicians generally are affiliated with the major cancer centers. Therefore, I firmly believe in asking the pertinent question as to how many patients have been treated in the respective practice or medical institution.
I don’t mean to imply for patients to not place trust in your doctor; they are the experts however, patients need to take an active role in their care and become highly educated about a disease little understood and lacking the necessary funding for accelerated research. Ultimately it is your disease, your response to treatment, and your trust in the physician in charge of your care that will lead to the best possible outcome with this cancer.
Hugs,
MarionRegarding this discussion board:
Not only is there an abundance of information to be gathered for patients and caregivers, I believe the medical community at large would benefit from taking a few hours to peruse this site for the wealth of information about this disease that is not all that readily available.
I have been communicating with Melinda regarding her trial in NIH and brought some of the information she shared as well as information from this board about the TIL Trial. Both oncologist and nurse practitioner were surprised that I was able to get such information from this format, and that we actually communicate with each other be it on the board, via email, or telephone conversations.
I believe I mentioned this in a previous post, but I blew away some of the nurses at the oncology office when I started dropping words like KRAS, EGFR, etc and actually knew what I was talking about. The nurses said they wished they had a means of getting continuing education along those lines, but since I am one of only 3 CCA patients in a rather large oncology practice, I am sure they won’t go through all that much trouble.
The monitors on this board are fantastic, and your time, effort and concern shows in your posts. Thank you all so much from the bottom of my heart. xoxoxo Renée
Hi Marion.
I am rather fussy about the accent in my first name, and especially fussy with how the name was pronounced when I was a child (a whole different topic). I had to pay extra for the accent on the wedding invitations, and that was in 1998, not all that long ago…or is it???
Years ago, I worked with a women who’s sister had the same name, and she accomplished the accent by typing ‘fiancee’ and used spell check to add the accent. I don’t think it works will all word processors (it does not work on Outlook), but we had Excel and that did it at the time in 2001-2002. I have been able to cut-and-paste it ever since, even adding it to the dictionary of Open Office.
I can be quite persistent
Very well said indeed Marion, as always! And Renee, you have much to offer as well so please do not feel that you don’t! Everyone with their stories and experiences have to much to offer I would argue. And would I be correct in saying that to type your name with an accent it would be something like Renay!
Hugs to all,
Gavin
You are welcome, Renee. Say, how do your type the accent in Renee? I can’t find it on my keypad.
This discussion board was devised for the purpose of sharing information and it has grown to be the most visited site (globally) focused on the disease of Cholangiocarcinoma. More is known of this disease than ever but, people have few others to share their thoughts with. Not only it is a rare cancer, it also causes the patient and caregiver to feel isolated. Support groups are difficult to establish due to the rarity of occurrence cancer hence, the age of the internet has aided us in the quest of bringing together those that are connected by a single cause.
Most importantly, this discussion board allows for total honesty; we speak of anything and everything pertaining to this disease without shame or judgment. Some may feel that personally they have nothing to offer however; that is far from the truth. Although there are many similarities there is also a certain uniqueness associated with treatment, response, and progression of this cancer. We admit not to be experts however; the combined knowledge on this site could fill a dictionary. And, for that reason and numerous others, this site has become the hub for those touched by Cholangiocarcinoma. Some day, we hope to turn off the lights (so to say) for a cure will be found however; until that day comes we are here to stay. This disease is underfunded, under-researched and lacks desperately needs attention. Together we can push for changes, help each other navigate the maze of information, support each other and lean on each other. That’s what we are all about. I am thrilled that you are part of the club no one wants to belong to, but given the circumstances, is happy to have found.
Hugs,
MarionThank you Marion. I am quite the lurker myself. There is so much put out for us that I usually don’t comment unless no one else comes forth.
You are right, of course. All comments are helpful to someone or another I suppose. I know I am all the better for the comments of other posters. The information I have gathered has made me much smarter about this disease and how to approach it. And has opened up many a discussion with my oncologist with a knowledge that I am sure he did not expect.Thank you, Marion, for your continued support for all of us, Renée
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