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Congrats on your good news!!! As with everyone else, I am so very happy for you.
See you some time soon…renee
Thanks, Danna, for getting back to me on this. As mentioned, my oncologist does not think outside the box, and if his senior partners are of the old school thinking, he probably has to go along with it.
For now, I have applied for Melinda’s clinical trial and should that go through, transplant won’t be on the table for a while. But like every other patient on this board, all options are in consideration until proven otherwise.
Best wishes and thanks again, Renée
Hi Kris. Yeah, I know, what a cold fish he was in the beginning. He is starting to warm up a bit, mostly because I keep him on his toes. But as I have mentioned before on other posts, there are only 3 CCA patients in this rather large oncology practice, so I don’t think the focus is too sharp when it come to CCA.
One issue is the attitude (I believe) on the part of the physicians: this is business, nothing personal. And when you’ve worked in medicine for over 30 years, you see the signs. Another issue is that my oncologist is the youngest and lowest member of the group; from what I hear from other patients with other doctors, I believe he is following the edicts from above.
I did not take his prognosis to heart, but it did get my butt in gear to tidy up some very loose ends. Now we are in a better place for when the inevitable happens…many, many years from now
See you next week!!! Renée
Regarding 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
Thank 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
Hey Patty, I forgot about that darn jaw pain…felt like I bit into something sour. Just another one of those PITA side effects, but nothing worrisome.
The trick for the painful eyes I found incidentally. My eyes were burning, so I bent over and made a silent scream (so as not to scare my husband since it hurt like a SOB)…which was more like bearing down. And it stopped the burning! Ever since, whenever I had that eye pain, I would bend over and bear down and it would stop. I hope that helps.
Glad you do not have the diarrhea issue that I had, but that was Xeloda related so I left that rather distasteful subject out!
Best Wishes to All, Renée
Tiff, great story of course, and great to put a beautiful face to the story we have been following…much better than an Avatar.
Continued success to you, sweetie. Enjoy your new life with the family.
Take Care, Renée
Hello Dorien/thebompie4, please let us know if you are able to get a telephone consult from Dr. Javle.
I live in NJ and don’t have any connections in Texas that would make it practical for me to travel that distance for a consult that would offer no change in the current treatment plan. For some reason, the East Coast does not look favorably on transplant as does Pittsburgh, Mayo, or MDA. I wish I knew why? I showed my onc a report on a successful transplant in U of Maryland and he brushed it aside stating one success does not mean anything. I get the feeling that they don’t believe in giving good livers to bad outcomes?
We don’t have any children – by choice – but I do want to live my life as long and healthy as possible. Not only for myself, but mainly for my husband John who loves me dearly and means the world to me. To that end, I would be willing to go to Texas if it meant a chance to extend the 12-18 month initial prognosis given in May 2012.
So far, my oncologist is following the straight and narrow treatment lines, but I have been looking for alternatives. I have been researching this site for successful clinical trials, liver transplants and the constructive information to back up my suggestions. But I am not willing to spend what little money we have to no avail so I really have to weigh my choices.
So back to my request, please let us know if you have any success with a phone consult. I did get one with a specialist in NYC once and it saved me a long trip to get the same answers I had already received. That was back in May 2012 and a lot has changed since then, so who knows.
Thank you and Take Care, Renée
Hello Regina, thank you for your response!
Since my most recent entry on this thread, I have started the FOLFIRI at a 25% dose reduction as my onc knows Quality v Quantity is my goal. I started my 2nd treatment yesterday and am on the pump until tomorrow. So far, I have not had the horrible experience I anticipated…phew. But it is still early in the game. I shouldn’t be due for my next PET/CT until October, but will watch my CA19-9 for any further increases. I am one of those that can rely on the CA19-9 as an indicator of success or failure of treatment.I am applying to NIH for their GI TILS trial, and because of my onc’s resistance to the trial to the point that I had to do something as my markers were rising, with the start of the FOLFIRI, it has to fail before they can put me on the trial…that is if I qualify in the first place. So my plan is to stay on the FOLFIRI for 4 cycles and take 1 cycle off before we go away to Bermuda for 2 weeks. That would give me the 28 day chemo wash out necessary to start the trial. And also gives the week before we leave to get the biopsy I would need for the trial, or I would want anyway to check for the genetic sequencing. Sounds like a good plan to me, but “man plans, God laughs”, so who knows.
The reason I need another biopsy is that it had been sent out so many times for evaluation, there is not enough tissue remaingin to evaluate. And with all that slicing and dicing, no one thought to check for genetic sequencing? But thanks to all of the information on this site, I know what needs to be done this time.
Does anyone know of success with FOLFIRI? It does not look to be very promising. On the bright side, however, that lack of success would get me on to a trial quicker…if I qualify.
BTW, what happened with your MD Appt yesterday? Any new plans in your future? I they come up with something that can help. Do keep us in the loop.
Take Care, Renée
Hi Shari. I was on Oxaliplatin along with Xeloda for almost 7 months (with a 6 week break in the middle). The Oxali has a lot of ‘fun’ side effects. Kris already mentioned the cold sensitivity and I am pretty sure the nursing staff gave you the heads up with that. As mentioned, gloves will be your best friends. Bring them when food shopping as refrig/frozen food will be painful. Keep several pair around the kitchen if you can. I had granite counters and even that was too painful at times.
Don’t even try to eat or drink cold items…the best it will do is feel like you are swallowing small shards of glass, cause a freeze/burn sensation on your lips and tip of the tongue. The worst is that it will give the sensation of your throat closing, and that can lead to anxiety and worsen the situation…NO ICE CREAM at all!!! At least for the first week, maybe even longer according to what your body will tolerate.
When brushing your teeth, make sure the water you use to rinse your mouth is room temp…it is surprising how little things like that can make a difference. Now that it is summer, not such a big thing. But when colder weather comes and colder water come from the tap, it will make a big difference. I used to test the water with my pinky knuckle.
When it gets cold outside (or you go into the refrigerated areas at CostCo and the like), cover your mouth/nose so as not to breath in the cold air.
Be aware that you might have muscle cramps at the most unusual times for no apparent reason: ‘charlie horses’ in calves and/or forearm, lip curls, eye lid twitches, hand contractions. I even notice that my eyes would hurt – a lot! – if the cold got to them, if I yawned, or if I cried. I even had an incident when I had a swelling in the front part of my tongue, like a muscle contraction that came for a minute and left. I could breath and swallow so I did not worry. But when I told the nurse about it the next week, boy did I get a tongue lashing! So be sure to report any unusual reactions to the onc team so they (not you or me) can decide what to do.BTW, I did not lose hair with the Oxali/Xeloda treatment, but it did not appear to grow all that much over the last 8 months.
I haven’t had the Cetuximab…yet. I would be interested in anyone’s side effects as well.
Good luck with everything. I hope this regimen keeps the beast quiet for a long, long time. If your “oral maintenance” is Xeloda and you need any helpful hints, I’d be glad to share. But I am sure you will hear much and better from the more experienced members of Our Team.
Best Wishes to You, Shari….Renée
Percy, thank you for your response.
I guess if I feel the need, I could take my chances on someone relatively local. The same friend who bought into the cannabis oil went to a nurse who practices naturopathic medicine, and walked out with recommendations for hundreds of dollars worth of supplements that she could purchase through their practice…surprise. The best our Oncology Nurse Practitioner would comment was that some could not hurt, others were a waste of money…she bought them all anyway.
Thank you for your ‘personal opinion that is not intended nor implied to be a substitute for professional medical advice’. I fully understand that, and appreciate your time and research that becomes beneficial so many of us on this site.
Take Care, Renée
Hi Percy.
How would one know if they are getting ‘good quality product’? Do you have some resources you would be able to recommend?Not living in a major metropolitan area, being somewhat sandwiched between NYC and Philly on the Jersey Shore does not count as a mecca for Eastern Medicine, or even Western Medicine at times. I would not recognize a reliable source on the internet. And I do not know anyone who is well versed in Eastern Medicine or CAM.
Even though I have been taking some for decades, I sometimes find it difficult to wrap my head around taking vitamins, herbals and supplements. How does one know that they are doing the job you intended them to do? And how do you know when you are getting ‘good quality product’? It is not like taking a bite of delicious chocolate and knowing you got the ‘good stuff’.
Similarly, the reality of chemo or any cancer treatment is that we never know for sure what is working until it stops working. It is all a leap of faith. You roll the dice and take your chances without regret.
Thank you in advance for any thoughts on the matter, Renée
Sadly, one of my ‘chemo buddies’ gave up on the chemo because it was so debilitating. She is 47, has four children – all have Asperger’s syndrome to some degree. She said she did not want her children’s lasting memory of Mom to be of her lying in bed, or being on or over the toilet. Can’t say I blamed her, the FOLFIRI really beat her up. The next line of treatment was said to be even worse with stronger side effects.
She saw a TV show about cannabis oil and how it kept an ALS patient alive and relatively well, and that it was ‘proven’ to cure cancer. That was all she needed. She researched and found a Canadian company that would sell her a one month supply of cannabis oil for…..$1200 a month! And she bought it. I did a quick internet search on the company she is using and all I read were negative comments. I told her and sent her the links, but she ignored them. I guess she is grasping for anything at this point. I haven’t heard from her in a while, and of course I wish her well and that this is her miracle cure. But to me, it sounds like someone taking advantage of a desperate person.
Do I believe that Big Pharma is taking advantage of us as well? Probably. Do I believe that some (not all!) physicians do not have the patients best interest in heart? Absolutely, I’ve been in medicine for far too long to believe otherwise. But I have faith in the science and research behind the treatments available, and sometimes faith is the best thing we have.
Thank you so much for these and yesterday’s post on the same topic. This gives me some ammunition as I go for my Oncology appointment today.
PCL: the oncologist knows if you know what you are talking about, they will look into your case more closely and carefully and who will be benefit for that? You the patient.
There have been times when I think he gives me answers that he believes will placate me. And sometimes I know he is giving me a line of hooey, but I don’t have the information to back up my argument. I have learned to go into an appointment with papers in hand to support a point I want to make.
My oncologist already thinks I am a bit of a PIA, but in a good way he says. This will only strengthen that argument…thanks to you!
Renée
