NickysFight.com

I’m so sorry for failing miserably at keeping up with our blog!  Mom is doing pretty well.  We had a really bad scare around Thanksgiving where she had to be hospitalized and we thought for sure we were going to  lose her.  Her liver enzyme, bilirubin, has risen steadily as her tumors have progressed but it unexpectedly spiked around the holidays.  When this happens, it leads to confusion so we knew something was wrong with Mom when she was babbling incoherently and wanted to sleep constantly.  We brought her to the emergency room where they did blood work and concluded that her liver function was failing.  People do not typically recover from this and we thought this was the beginning of the end.  We think this crash was due to her mistakenly taking double her dose of pain medicine.  We always try to have someone give Mom the pills when we can but her chemonesia will sometimes make her forget what she has taken  so she occassionally takes too much of something.  Her liver couldn’t deal with the overdosage (they think that is what caused it).  Luckly, Mom’s levels dropped back down to 2.4 (still high) and she became lucid again and has been doing great ever since.  Her bilirubin levels continue to steadily rise and are now actually higher than they were during the hospitalization but the doctors said that because it is going up slowly, her body is able to handle it and compensate.  So it’s still a terrible sign that things are getting worse and progressing but at least she feels well and is able to get out and about and knows whats going on so we can spend good quality time with her!  We have another scan in the next couple weeks so hopefully we will see that things are not as bad as the bilirubin levels are implying.  In other news, towards the end of the year Jay quit his job to stay home with mom full time.  This has been wonderful!  It has really boosted Mom’s spirits and we think it is so important for them to spend this time together even if it does mean we will all be super poor!  They have been lucky enough to get a couple small grants through the hospital to help with gas and food and Jay’s boss, Derek,  in Texas has been extremely helpful and supportive which means so much to them.  Please keep Mom in your thoughts.  All of her nurses where calling Mom their Christmas Miracle because they were so worried that she wasn’t going to return after her emergency room visit.  She is amazingly tough.  She really is miraculous.

I’m so sorry I have been so terrible at keeping up with the site lately!  But in this case, no news is good news.  Mom is doing great!!!  She has another scan on Friday, July 23rd so I will definitely post again after we get the results from that.  Mom has been terrible about asking what her CEA levels are when they do her bloodwork so we don’t know where we are with that.  Mom is still getting weekly treatments of chemotherapy.  She is still on the same bi-weekly cycle of Erbitux and Irinotecan.  One week she gets both and the following week she only gets the Erbitux.  She doesn’t get the rash that Erbitux can cause too badly.  Her cheeks can get very flushed and some weeks she will get a couple spots of rash on her hands and chest but it’s very mild.  They prescribe her antibiotics to take if this rash does start to get worse.  Mom’s quality of life is still so much better than it was.  The daily shots she was getting for her low blood counts always really did a number on her.  They caused her legs to swell up terribly so since she is off all the nasty Neulasta and Neumega shots, she is really doing great.  The only concern we have had lately is she will have these weird bouts of confusion.  We don’t know if its her messing up her pain pill dosage which is totally possible.  She has a very hard time keeping track of her pills.  We organize her pills for the week in a pill box but the pain pills are as needed and we find pills laying around sometimes, like she gets them out, forgets if she has taken them, that sort of thing.  Or, we think it might be related to them changing her anti-depressants.  She really didn’t like Cymbalta right from the beginning when they changed her prescription but they told her to stick with it.  Well she got spacier and spacier and then started having these scary confusion spells.  So we talked to the doctor and she is in the middle of the transition back to the Prozac since you can’t just start and stop those things.  You have to ween off one and ween on the other.  Lastly, it could just be exhaustion.  You know Mom, she always tries to do too much and doesn’t listen to her body   Oh, and then the 11 ton gorilla in the room is the dreaded diabetes diagnosis.  Honestly, Mom’s not adjusting well.  A little bit she seems to be refusing to change her lifestyle to a diabetic one.  Which, fair enough, I get it, it’s hard but it’s important.  So she see’s the doctor tomorrow for a checkup on the status of her diabetes.  She has been stressed all day about how she is going to get her butt chewed because her blood sugar levels are not and have not been where they are supposed to be.  That’t my mother.  She has always had a sweet tooth and an aversion to change which are both not helping the situation.  But we are slowly finding her alternatives to the things she loves and is used to.  Thank goodness for Diet Rootbeer!  It’s the only diet soda that tastes enough like the real deal to keep her happy. 

 But overall Mom is feeling really good.  We had a great time for Mom’s 54th birthday on July 17th.  Julie threw Mom a pedicure party at the Ten20 Salon in Boulder, CO.  It was so fun!  There was 10 of us that went and it was a blast.  Grams loved it of course too!  Mom is spending a lot of time with Grams lately.  We are happy to report that Grams is retired (semi-retired at least) so she will be around even more to spend time with Mom and accompany her to Dr. appointments etc.  It’s about time you retired Grams!  She is 76 years-old.  Jay is still working hard to bring home the bacon.  He is travelling over the road still with the company in Houston he loves so much.  He always has great things to say about his boss, the company and his co-workers.  I’m so glad he has found somewhere he loves to work.  That’s such a rare thing in the trucking business.  But we miss him when he’s gone Mom especially misses him but he actually gets to come through Denver quite often.  Mom and Jay are still living with Uncle Char which is working out really well.  Thanks Uncle Char, we all really appreciate all that you do.  But it works out pretty well since Uncle Char travels over the road all week and Mom gets the place to herself.  Well that’s about it but I hope we get good news or at least neutral news when Mom gets her scan on Friday!  I will let you know how it goes.

Mom’s tumor markers have been steadily decreasing ever since she started on the new treatment, Erbitux and Irinotecan.  Her CEA levels had been up past 1300 but the latest reading is 561.  Yaay!  We are hoping that is a good sign.  But we are still anxious for the next scan……..as always!  But she feels pretty good on this chemotherapy.  Right now she is getting weekly treatments but if she keeps doing well then Dr. Kane said she may be able to spread out the treatments to every two weeks so Mom would be free to go on the truck with Jay here and there which she would really enjoy.  I hope the tumor markers keep up this trend.  She had been below 300 when she initially started treatment so we would at least like to get there.  Keep killing that cancer! 

Ju, Mom, Grams and I are headed to Las Vegas this weekend!  We are going to see “Menopause the Musical” and a David Blaine magic show.  It should be a great time! 

Mom is still getting weekly treatments of the Irinotecan and they alternate every other week with Erbitux.  Here is a related article http://www.news-medical.net/news/2004/07/21/3485.aspx.  We haven’t had another scan since she visited the Cancer Treatment Centers of America in Tulsa.  Dr. Kane had her start the Irinotecan and Erbitux immediately after she returned to Denver.  That was several weeks ago so hopefully we should be getting a scan in April.  I will let everyone knows how it goes!  Since the Irinotecan works differently than regular chemotherapy we are hoping to see some actual results!  It’s actually not a chemotherapy at all.  It is a Topoisomerase I inhibitor which prevents DNA from unwinding which is supposed to help inhibit the cancer cells from replicating.  Her CEA levels have dropped since starting this treatment and we hope that is a good sign.  But we have also learned that CEA levels are not a perfect indicator for what the cancer is doing. 

We would also like to thank Lea for her donation in January!  We really appreciate it

Mom and Jay are spending the week at Cancer Treatment Centers of America in Tulsa, Oklahoma.   They are having an intial visit to decide if they like the hospital.  So far, they love it.  It’s nice to have all of the treatments and facilities you could possibly need to treat your illness all in one place.

I’ve decided we all probably need to donate blood to replace the many pints that Mom has needed during her 3 years of treatment.  I have donated before but it’s been a little while so it’s only fair since Mom had to get 2 more pints today that someone very graciously donated.  Thanks blood donors! 

 So Mom’s fall was worse than we thought   She spent most of the day consulting with a surgeon, getting looked over, and receiving 2 pints of blood at the hospital.  They were worried that she might have had internal bleeding from hurting her stomach and stoma area when she swan-dived into the pavement yesterday; sorry Mom but it is kind of funny, lol.  Luckily, they decided that she is okay after being checked out and that they don’t actually think internal bleeding is occuring.  But they told her to take it very easy for the next several days.  She felt really good today but she usually always does after receiving blood.  She wanted to go shopping afterwards of course.  Hopefully we can avoid any more falls for awhile!

One of the worst side effects of all of the chemo and medications is Mom’s instability.  Falling is becoming a more and more common problem for us.  Julie just got Mom a mini-fridge for her room so we could try to avoid her having to go up and down the stairs as often, especially at night.  She has fallen down the last couple of steps several times now.  But she had her worst fall today   She was walking into the hospital and tripped and fell on the pavement.  She is pretty badly bruised but luckily she didn’t break anything.  It must be a common problem because the hospital always asks her about falling, if she has fallen recently, if she is afraid or worried about falling etc.  I’m just concerned that its getting more common and she is going to really hurt herself.  Has anyone else had this problem while on chemo?

There’s not really much to post about but I just wanted everyone to know Mom is still doing okay.  She is still doing the bi-weekly rotation of chemo.  She is still on the Folfuri and Avastin I believe but should double check.  We are hoping that another clinical trial comes around that she can qualify for but for now it looks like Mom gets more chemo for Christmas.  I wish we had more exciting news or more going on……….but no news is good news with cancer sometimes   Happy Holidays!!

We are pretty bummed Mom wasn’t chosen as a viable candidate for the study.  Something about being MSI stable disqualified her from the study.  So apparently her cancer is too genetically stable for the type of treatment they were examining.  So she will continue on the regular chemo she has been on for now.  We are hoping there will be another clinical trial option down the road that she will qualify for!

Hey everyone

 I haven’t posted in a while but Mom is still chugging along through all her treatments.  On the latest PetScan, some of the liver tumors showed slight growth, 2mm or so.  And they still don’t know what to make of the spots on the lungs.  They aren’t showing up with metabolic activity but there were a few more small (1-2 mm) nodules so we are a little concerned about metastasis.  Mom has been on the pill form of chemo for the last couple of rounds which she loves since she doesn’t end up having to be at hospital constantly.  But the doctors decided to put her back on the Folfuri infusion which means she has to wear the pump for 3 days after chemo day.  We think this is because she still keeps showing slight progression on the other forms of chemo.  We don’t want that!  So i hope this Folfuri keeps it back.  Also, they brought up a new clinical trial to Mom because she is a good candidate.  It’s for people who are having progression of their cancer while on traditional forms of chemo.  It is a PARP Inhibitor called Olaparib which from the literature sounds like it repairs nicks in DNA.  She meets with the doctor running the study next Tuesday.  Our main concern about the study is if they want to take her off all forms of the traditional chemo then we worry that things could run rampant.  So we aren’t making any decision until we find out exactly what the line of treatment will be and how it will affect her current treatment.  Also, we want to find out what the side effects are since each of these beautiful cancer drugs comes with it’s own line of bizarre side effects.  Mom is going through a constant cycle of turning red, swelling up, hair turning curly and dark, weight gain, weight loss, super hungry, can’t eat anything, red bumps, tingling all over……..the list goes on and on.  Poor Mom!  We love you!

 I will let you know how the meeting about the clinical trial doctor goes and what Mom and Jay decide to do.