Topic: Haven't been here in a while . . . . Update on me.

Hi everyone. Here I go again with chemo! I have a mediastinal lymph node and a retro peritoneal lymph node that lite up on my last PET scan. I started gemzar, oxaliplatin, and cetaximab today. Day 1 is gemzar and cetaximab Day 2 is oxaliplatin. A week off and start over. We are going to do 4 cycles (2 months) then another PET scan to see how the lymphs are responding. If I am responding the plan is a total of 12 cycles and oral maintenance.

It has been 3 years since diagnosis. I have had 60 percent of my liver removed, 6 months of IV chemo, part of my right lung removed, 4 months of oral chemo, SBRT of my left upper lung, and now my third time with chemo.

With chemo before I have never lost all of my hair, it just thinned. This time I might lose my hair. I had just grown it out, but was able to cut off 9 inches to donate to Pantene for wigs for cancer patients.

I am having a harder time this go round. I have never felt 'sick' through all of this. I have continued to work full-time and refuse to let cancer define me. I just want to live to see my nieces and nephews and great nieces and nephews grow up. I made the choice not to have children, I just have two little furry puppies that melt my heart. I just want to live! Ok pity party is over! Just needed to say it out loud and get it off my chest in a safe place to people who understand.

I am so lucky to have a great support system of family and friends to help me. Any suggestions on this go round send them my way.

Thanks,
Shari

Re: Haven't been here in a while . . . . Update on me.

Dear Shari, I feel extremely honored to have been invited to your "pity party", we all need them now and then. You have been through a lot and now more to come and I am so hoping for you to have good results. You remind me of the Timex watch, "takes a lick'in and keeps on tick'in". Oops, you may be too young to know about Timex! I can't give you any suggestions as Teddy never had Chemo but I can let you know I am thinking about you and wishing you the very best. And as usual please keep us posted!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

Shari,

Thanks so much for updating us.  I often think of you and have wondered how you have been doing.  Sorry to hear you are having a harder time with this chemo. I am not very familiar with that chemo combo.  But I'm sure others will chime in.  Keep us posted.

Take care,

Susie

Re: Haven't been here in a while . . . . Update on me.

Lainy . . . I do know about Timex and that is exactly how I feel!

Re: Haven't been here in a while . . . . Update on me.

Shari....Kris's statement touched me today.   It went something like:  "it's o.k. to have a meltdown just remember to get up, dust yourself off and start over again."  Therefore, dear Shari, let it out, you have good reason to complain; you have been such a trooper all along.  Neurapothy is one of the most pronounced issues you might be dealing with, a bit like the Xeloda produced side effects with a few more added to.  We have reports of people bundling their faces in cold weather to wearing gloves for grasping anything from the fridge.  But, I am sure that you will receive quite a few suggestions from others.
Good luck, dear Shari.  We are rooting for you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

Dear, dear Shari....what bummer news.  We are all there by your side rooting you on.  You will do it just as you have done with all the other bumps, carry on
with amazing courage. Your will to live will carry you through. Hug tight to your puppies.
Love, Kathy

Re: Haven't been here in a while . . . . Update on me.

Shari, sorry to read this.
My suggestions re oxaliplatin: have gloves handy, and sandals will not be appreciated! Socks will help. I used to put gloves on to take my eggs out of the fridge and wait until they warmed up a little before I cooked them.
Room temp drinks are going to become your friend, too.
I'm rooting for you! And Marion, the meaning was the same if not the words. I can't quite remember what I wrote but if that wasn't it, it was sure close.
I'm pretty sure we all have meltdowns. Most of mine are for others, and for the unsurety of the future. I allow myself a cry, then mentally pick myself back up.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Haven't been here in a while . . . . Update on me.

Hi Shari,

Thanks for letting us know what's happening with everything right now and you go ahead and vent. Saying things out loud certainly helps get stuff off of your chest so you go ahead and do so and you know that we will be here listening and to help as well if we can.

I can't help with personal suggestions re chemo as my dad never had it but I know that others will have some for you. Sounds like you are getting your fighting gloves on again for this and I hope that your chemo goes well. Please keep us updated on how that goes for you and know as well that we are so here for you too.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Haven't been here in a while . . . . Update on me.

hi Shari,

Thank you for the update and I am so sorry you are going through all of this again.  I had chemo, but just Gemzar, so I can't speak to you about your current chemo.  You have sure been through a lot!

I had a friend give me a suggestion when I was going through treatment.  She said when she had cancer it was always so hard to be "up" all the time for everyone else.  She gave herself a time every day to cry, rant, sob and feel sorry for herself if she needed it. It worked for her.

Come here anytime to rant.  We have all gone to the pity party at one time or another and we are here to attend yours!

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

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

Re: Haven't been here in a while . . . . Update on me.

well as you can see by my name I have had quite a few meltdowns myself!! 
I am on my 1st week of Oxaliplatin & Xeloda!  Strange side effects!  When I take my 1st bite of a meal I have bad spasm pain in my jaw but only for the 1st couple of bites then it is fine!!  Then I got teary eyed the other day & it burned really bad.  I also got very constipated & hadn't even taken any anti nausea drugs.  If constipation is listed as a side effect I get it.  Then I am in danger of getting diverticulitis.  I had some pain yesterday but today it is gone!  Thank God.  I take lots of miralax & stool softeners.  This is 6th day & I am feeling better.  Not so sensitive to touching cold things. 
I hope you tolerate your chemo cocktail!  They are all different for sure.  I had hardly any side effects with Gem/Cis besides fatigue & a little nausea but it didn't work! 
You have such a great attitude!  I'm trying!  Take care & God bless!

Re: Haven't been here in a while . . . . Update on me.

Renee....the most experienced people on this board is comprised of people like you.  All information exchanged on this board benefits our members and the numerous non-members  "lurking" on this site.  It is invaluable knowledge.
Thanks and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

Pattymelt....I had not made the connection of "melt" and meltdown, but sure understand now.  Hang in there, dear Patty, you are due a positive response. Sure is good to hear that the side effects are leveling off on day six.  May it continue.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

Patty, you can do it! You can do it! We are all cheering for you and a good outcome! You never know how strong you are until "strong" is the only choice you have! You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

Thanks for the encouragement!  I feel good this morning! Going to get a relaxing massage & maybe some acupuncture!

Re: Haven't been here in a while . . . . Update on me.

Sounds good to me, wait for me!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

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

Re: Haven't been here in a while . . . . Update on me.

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

Re: Haven't been here in a while . . . . Update on me.

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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

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! smile

Hugs to all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Haven't been here in a while . . . . Update on me.

Gavin, I mean the little ' above the "e".

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

Oops, apologies!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Haven't been here in a while . . . . Update on me.

No problem, dear Gavin. 
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

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 smile

Re: Haven't been here in a while . . . . Update on me.

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