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(13 replies, posted in Introductions!)

Hi Suzan - First, welcome to the site, sorry you had to find us.  What good news you share with us today!  Regarding liver regeneration, that is a good question for your surgeon. I also had a liver resection, but for some 'strange' reason, my liver did not regenerate back to capacity.  it's just one more way I'm 'outside the box' with my CC journey, according to my doctors.  But for only having 25% of my liver left, I'm doing OK.
I think I can speak for all of us who have had chemo, getting 'CHEMO BRAIN' is a very normal side effect.  Some chemo drugs cause chemo brain worse than other drugs (at least in my experience, and I have been on several different chemo drugs in the 2 1/2 years since I started down this wacky crazy road).  I still search for words sometimes but am better at forming a complete thought and verbalizing it.  One thing I have learned to do is, the minute a thought pops into my head, write it down immediately.  Otherwise, for me, the thought disappears as quickly as it came.  I am always writing post it notes to myself like 'start dishwasher', or 'call so and so'.  For a while it looked like (and still does sometimes) that I'm redecorating my home with post its!   I also lose my train of thought frequently in the middle of sentence, so I just laugh and say 'oh well, that train left the station'.  Sometimes the thought circles back around and sometimes it doesn't.  Luckily my family and friends are sometimes able to help me reel the thought back in too.  Keep asking questions, knowledge is power.  Take care!

I had the honor and privilege to go to Kris' Memorial Service this past Saturday in South Carolina.  I was even more lucky to have my sister with me as she had also corresponded with Kris before, and has posted on this board as well.  The three of us were the Carolina girls with the Clemson/Carolina rivalry going, and we all had poked at each other about it, but always in fun. 
It was a difficult service for everyone, but one thing that kept coming through, from her friends, her family, and from Hans, was how much Kris enjoyed life and lived it to the fullest, and how much fun she had living her life.  Each person that spoke, at one point or another, broke out in laughter telling a Kris story, which in turn made everyone laugh, nodding our heads as we all seemed to be thinking the same thing, 'that's so Kris'.  One of the gifts (of which there are many) we are left with from Kris is that this amazing, generous, thoughtful, extremely brave, funny person that came through in her posts, was actually how and who she really was.
I was extremely honored to be able to meet Hans and spent some time talking to him.  He seemed genuinely happy to meet just one of the many people that are forever changed for having gotten to know Kris through this board, even though most of us never met her face to face, but because of her gift of sharing herself on this board, we all felt we knew her.
In speaking with her mother and her sister, they shared that until Kris passed, and after seeing all the posts from so many members, they had no idea what an impact Kris made on this board.  They knew she posted on here but not to what extent the difference she made to so many, encouraging, informing, finding humor, consoling us all.
There was a celebration of her life following the service that included a wonderful slide show that Kris's sister Andrea had made.  She also included in the slideshow, posts from this board that people left after Kris passed.  You couldn't help but smile looking at all these pictures of Kris' life, seeing her smile in every single one.  There was also a ton of food and a wonderful dessert table with a chocolate fountain.  I don't know if this was at Kris's request but it made her celebration of life seem more like a party.   What a way to remember such a very very special person, that Kris Jurgens.
Kris' urn had a butterfly on it, and Hans placed a jeweled butterfly next to her after he spoke. 
I am forever changed.

Jill - I have BCBS Open Access.  I was originally denied my first PET scan so the doctor had to do a peer to peer review with the BCBS doctor, then jump thru some more hoops but eventually he was able to convince BCBS it was necessary.  I don't know exactly what he said to them but perhaps you can ask your doctor to jump thru hoops too.  I have had a mostly positive experience with BCBS.

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(134 replies, posted in General Discussion)

There are no words.

Latest scans show no new tumor growth and 2 of the PITA (aka: pain in the ass) tumors have shrunk a bit!  That was a good Christmas present!

I had my 5th cycle today, bumped up to 70 percent dosage.  I'll just keep keeping on until i get to 85 percent.

Had to buzz my hair...first time in 2 1/2 years that i've had a major hair loss issue.  Oh well...guess it was my turn.  now i have a cool spiky 'do.  LOL at least washing and drying the hair is faster!

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(18 replies, posted in Members' Cafe)

OK...I have to chime in.  I'm have a huge sweet tooth, and have been loving the cinnamon rolls from Ikea (yes we have one in Atlanta).  I can't get enough of them.  Oh and snickers bars, and apple cinnamon muffins....I could go on and on....OK, one more...blackberry and raspberry gummies.   Stopping now...

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(19 replies, posted in General Discussion)

Kris - you trooper!  Thinking of you constantly.  All the best for Monday.  My prayers and thoughts are with you.

Today was bone marrow biopsy day and boy was it fun!  Actually, it really wasn't as bad as I thought it would be.  The worst part for me was the injection of the lidocain to numb the area that would be nicked to insert the tube thingy (official medical word) to extract the bone marrow.   For me, it was not as annoyingly uncomfortable as a paracentesis.
Now, as usual, it's just waiting for the results to come back, which will be late next week some time.
If the platelet production in my bone marrow is normal, I'm probably looking at a spleen embolization in the very near future.  I think that will be a much different story as far as pain and discomfort are concerned.  Hopefully though, doing this will cause my platelets to be released and go up, so I can seriously look at clinical trials.
So much fun to be had......

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(22 replies, posted in General Discussion)

Kris - we are kindred spirits!  So many jokes run through my head that others would find positively morbid if I said them out loud.  So now is the time to make this solemn vow (ala Animal House):  "I, (state your name), do hereby vow to be completely irreverant in the face of this thing that may or may not bring my body down but cannot take my sense of humor, however dark others may find it."  Then ceremoniously eat a big piece of cake, or smear the icing on your face.  Whatever makes you feel good.  This is just what I needed today!

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(13 replies, posted in General Discussion)

Results today.  Would have loved to remain "ignorant" but it didn't work out that way.  The cancer is awake again after almost 3 months without chemo.  Platelets are still in the toilet, my CA19-9 is rising, bilirubin is slowly creeping up.  One tumor has grown and I have a couple of new spots.  But one good thing is there are no mets outside my liver.  Starting on Xeloda, and looking at a bone marrow biopsy to try and figure out this platelet issue.  May be looking at a splenic embolization.  Until my platelets are at least 100 I can't even be considered for any clinical trials.  Will also be researching a possible chemo pump implant.  I need more info.  Man, it just gets better and better (said with sarcasm).
Thanks for all the support, and I'm still glad I had my "ignorance" dinner.  I highly recommend it, good food, great family, great friends, lots of laughs.  This is what I live for.
Kris - SC rocks!

Thursday I find out the results of my latest scans, so Wednesday night I had a "ignorance is bliss" dinner with my husband and one of my close friends..  It was great!  I thought that since Thursday could bring crappy news I would have a good dinner since I might be a complete wreck after seeing the onc.   Sure would be nice to have a plain 'ole "bliss" dinner Thursday night.  Wish me luck (gosh I hate this rollercoaster).

Is this the same as radioembolization?  It is also done with Y-90 spheres.

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(8 replies, posted in Chemotherapy)

I use the same thing that sduggins husband uses.  It's called Emla cream.  It's a great thing but for me it takes about an hour to numb my skin really really well.  Tell your Mom to put a big glob of it on, not just a little bit.  I hope this gives her some relief.

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(8 replies, posted in Chemotherapy)

Does your mother numb her port before access is attempted?  I do this every time my port is accessed, with a cream I put on about an hour before and cover it with Glad Press & Seal wrap (it sticks to the skin but not like an adhesive).  There have been several times when the nurses were not able to get blood through my port, but it didn't affect the chemo going in.  They explained to me that cells build up at the port opening to the artery and then open and close like a flap, so that when they try to get a blood return it closes but fluid going in pushes it open.  I would just have them access a vein in order to do my initial blood work.  Sometimes they were able to get a blood return by putting me in one of the chemo recliners and tipping me a little backwards, they called it a positional thing.  Also, there is a drug called activase (I don't know how to spell it) that I have been given to dissolve the cell flap.  I used to get upset and really concerned when they couldn't get a blood return but the nurses told me it wasn't really an abnormal thing.  They always told me they have lots of tricks they could try to get blood return before having to check the port function.  But do check with your doc about your concerns.

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(8 replies, posted in General Discussion)

My spleen is also enlarged, though only slightly, and my platelets are up and down.  My doctors have told me that my spleen is "harboring" the platelets and releasing them sporadically, so that's part of the reason my spleen is enlarged and my platelets are kind of all over the place.  Last week my platelets were 56 and this week they're 46.  Hopefully they'll be high enough next week for chemo (my last treatment was 2 weeks ago), which is annoying to me because you would think the further away from chemo my platelets would go up but instead they bounce around.  My docs have given me chemo with my platelets at 59, but they prefer 70.  I don't know of anything to try at home that will help boost my counts, but maybe someone else knows of something.

Hi everyone - just thought I would pass on the details of the desensitization procedure I started and has so far been successful.   I've been on FOLFOX6 since September 2009, then in Jan 2010 had an allergic reaction.  Had the first desensitization on Feb 4 which went fine, no reaction.  Had my second one yesterday, again no reaction.  So this is how I'll be receiving this chemo from now on. It takes about 8 hours from start to finish, so in case you have to go through this be prepared for a really long day. I have my bloodwork done the day before to save some time.   

Instead of receiving the full dose of oxaliplatin in 1 bag, it is split into 5 smaller doses that are given over a 6 hour period.  Before I am given the oxaliplatin, I am given premeds of singulair (pill), pepcid (iv), benedryl (iv), zofran/decodron (iv), and ativan (iv).

Bag 1 of oxaliplatin is given at .01 mg of full dose over 1 hour
Bag 2 is given at 0.1 mg of full dose over 1 hour
Bag 3 is given at 1 mg of full dose over 1 hour
Bag 4 is given at 10 mg of full dose over 1 hour
*I am given another dose of benedryl before bag 5 is given
Bag 5 of oxaliplatin is given at 90 mg over 2 hours
After the last bag is given, the 5FU pump is attached as normal
I no longer get the Leucovorin or the 5FU bolus (due to low platelets)

I sleep until lunch (which my fantastic husband brings me (love Cracker Barrel), then sleep for a while longer, then I'm just kind of groggy the rest of the day.  The benedryl/ativan combo wipes me out.

Hope this is helpful.

Well, I went for chemo yesterday (treatment #7) and had a more interesting day than I was expecting.  I had finished getting my pre-meds, and was less than 5 minutes into getting the Oxaliplatin when my mouth, tongue and lips got a horrible burning and tingling  sensation.  Then my hands and feet started itching and burning and the rest of my body started tingling.  I got light-headed, started getting nauseated then threw up, then got extremely severe abdominal and leg cramps.  The nurse immediately gave me benedryl, checked my blood pressure which was very low, also gave me more anti-nausea meds, pepcid, ativan (because I was hyperventilating).   After about 15 minutes the itching and burning started to lessen but the cramps were still really bad.  The cramps eventually stopped but I'm not sure how long it took, as I was pretty out of it due to the meds they gave me.  They wanted me to stay because they hadn't seen the cramps before as part of an allergic reaction, but all the other symptoms they had seen before.  I slept for about 2 hours at the cancer center then went home and slept for another 2.  I feel fine today, thank God!  I was completely freaked out yesterday, I've never had a reaction to chemo before and that was a scary one.  I thought I was going to end up in the hospital.  No one can explain why all of the sudden I've become allergic to Oxaliplatin.  I've not changed or added any medications or foods so I'm stumped. 

They're working on a solution so that I can stay on the Oxaliplatin because it seems to be working (for now).  There is a treatment where they may try to desensitize me to it but I don't really have a lot of detail.  Has anyone had to be desensitized before due to an allergic reaction to chemo drugs, or any experience with allergic reactions and what was done as far as staying on the same chemo drug or switching to a new treatment?  I don't know what my chemo options are if I can't continue with the Folfox treatment.  Thanks for your help.

18

(10 replies, posted in Chemotherapy)

Hi Kathleen - after the gem/cis stopped working, I did have the spheres, then started on the Folfox treatment.  The Folfox treatment makes me tired and low energy, but not as bad as the gem/cis.  I also have developed a sensitivity to cold with the Folfox.  My dose of the Folfox has been reduced by 20% because my platelet count got really low and I now have treatment every 3 weeks instead of every 2 because my platelets don't bounce back fast enough.  Also my white blood cell count stays a bit low.  Wonder why your doc is nixing every treatment for your Mom.  Is it because she has mets?  Where are you located?  Is there another cancer center or oncologist close by?  Maybe it is time to get a second opinion.  I think with MD Anderson you first send the medical records and they give treatment advice or set up an appt.  Others on this site have more experience with that so maybe they can comment.  Don't give up!

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(10 replies, posted in Chemotherapy)

Hi lovemymom - your words are so encouraging to me.  Thank you so much.  As far as advice for your Mom, the treatment I've been getting at Winship Cancer Institute (at Emory in Atlanta) has been so amazing that I have not felt the need to go for second opinions, yet.  I'm not sure yet what my next step will be, but I will be turning to this board when I have to figure it out.  I have not yet been turned down by insurance for a particular treatment that has been recommended, but the doctors did have to jump through hoops with the insurance company so I could get the FOLFOX chemo.  I do know that at the cancer center where I receive treatment they have access to programs to help pay, if needed, for treatment.  I would definitely ask about that and also get with a social worker at her hospital or cancer center to help with that.  I was on gemzar/cisplatin and it also stopped worked for me, then I was offered radioembolization (sirpheres or therespheres).  Have you looked into that, or chemoembolization?  My CA19-9 has been kind of all over the place, so that number by itself doesn't necessarily mean something horrible.  Please don't give up on your Mom, her will to live sounds really strong and that can take her a long way.  I wish you and your family the best of luck and prayers to get through this crazy thing that's happening.  Hope I was able to help.

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(29 replies, posted in Good News / What's Working)

Congratulations!  That is great news!  Have you been on chemo this whole time?

21

(10 replies, posted in Chemotherapy)

Hi jane638 - So sorry to hear about your additional tumors.  I had resection, then was on gemzar/cisplatin but it stopped working, then had sirspheres, and then started FOLFOX 6 (which is a colon cancer treatment).  Docs could not say if the sirpheres did the trick or it was the FOLFOX, or the combination of both.  I would definitely ask your doctors about FOLFOX6.  I have had low platelets since right after I started that chemo, and they had to reduce my dose 20% and eliminate the 5-fu push.  I am now having to get it every 3 weeks instead of every 2 weeks also due to low platelets.  But since gem/cis stopped working, I think my options were limited.  As you may have read several times, whatever decision you make is the right one for you.

22

(10 replies, posted in Chemotherapy)

Hi everyone.  Hoping for some advice, but maybe counting my chickens before they hatch.  As of my last PET scan in October, I have no active disease and I'm obviously really really happy about that, but I have scans coming up the end of January and another PET the end of February, and I'm trying to get all my ducks in a row for when I see my oncologist at Emory to go over the scans.  I know there are a few of us who have had successful treatment and are currently cancer free (or active disease free per my doctors).  For those who have been cancer free for a while, are you still having chemo, but if not how did you decide to stop having chemo?   Right now the thought of stopping chemo scares me pieces, but I haven't even had the scans so I may be jumping the gun.  I just want to be prepared for whatever the scans show, good or bad.  Also, are there any thoughts on what happens if you stop a chemo treatment for a while (as in months), then the cancer comes back, can you go back on the same treatment or does your body adapt and you have to try a brand new treatment?  I'm starting to panic myself thinking that if I do stop chemo, then if it comes back, I can't go back on the same treatment i was on because it won't work anymore.  I'm probably rambling and sure hope this post makes sense.   Thanks for any thoughts.

Thanks to everyone for all your great responses and support!  My plan is to continue with chemo but hopefully in Feb or March stop chemo long enough to have my hernia operated on.  I call it my "alien".  It's so huge I had to get a girdle type garment to keep people from running and screaming in the other direction hoping nothing will pop out and get them!  (sounds gross right?)  Has anyone else had a large hernia operated on with success?

Well, I haven't posted in a while but I do want to share my good news, hopefully it will be good information for others on this site.

I found out today, with amazement, that there are no active tumors in my liver!  As I type it, I can hardly believe it!  To get to this point, I have had a liver resection in February, multiple rounds of cisplatin/gemzar, radioembolization in August of this year (which is now considered a success), and 3 rounds of FOLFOX6 chemotherapy.  There is no 100% way to know if one or the other did the trick or if it's a combination of both.  I will continue with the FOLFOX chemo until, well I don't know yet.  But I will get another PET scan in 3 months.

I just want everyone to know that there is definitely hope to be had.  I know this doesn't mean I'm cured but maybe I can relax a bit and enjoy, really enjoy, my life without as much anxiety and worry as I have had for the last year (my husband and family too!).

This site means so much to me, and gave me hope when I needed it the most, and continues to give me so much knowledge and support.  I only hope that I can give back as much as I've received. 

Keep hope!

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(16 replies, posted in Thought for the Day)

I can eat a banana, but only if it's cut into slices.  which if done by my mom, the banana tastes so much better when someone else slices it!