NICKYSFIGHT.COM

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.

http://www.komendenver.org/site/TRC/Race/General?pg=peditor&fr_id=1090&px=1588341

Our family is planning to walk in support of our favorite survivors, Grams and Aunt Paulette!  (And Mom too! who says it can ONLY be for breast cancer).  We love you guys!

We were happy to hear that Uncle Terry received a clean, cancer-free bill of health!  CONGRATULATIONS!!!

Grams as well has thus far had the same news.  Mom isn’t cancer free but she is doing great on her treatment!  She is on the Xeloda (pill form of chemo) in place of the 5FU intravenous.  She still receives several other drugs intraveneously but her blood levels are maintaining a much better level since on the Xeloda.  Her and Jay are working on getting their own place in Colorado which would be great.  We will have to wait and see how the next scan looks to really know how she is doing on the Xeloda but I recently read several articles published recently on the NIH website and the Xeloda compares very well to the 5FU; no better but no worse.  And since it makes her life so much easier not having to have the daily shots then I hope it works out for future treatments!  We will keep our fingers crossed for the next PetScan.

Mom is on the truck with Jay for the week.  She got her regularly scheduled chemo yesterday and they bumped up the dose.  She handled it well so she decided to play hooky from the Neumega shots for the week and go on the truck with Jay.  The doctor advised against it because she doesn’t want Mom to run the risk of getting an infection since getting the daily Neumega shots bump up her white blood cell count and therefore help protect her from infection.  But Mom really wanted to get out of town and away from the family, spend some time alone with Jay, and see her house in Texas before it sells or goes into foreclosure.  She called it her “sanity trip” so although she is taking a risk, I’m happy she is getting some time away from the hospital. 

And overall she is doing pretty good.  The last PetScan was good with no new disease or growth and her tumor markers (CEA levels) dropped 200 points!  So she earned a break.  Have a good trip Mom!

Mom met with Dr. Kane today and the results of the PetScan were pretty good.  Of course we would rather hear that things are shrinking or disappearing but things are staying the same.  There was no new disease, no spread of disease and the size and metabolic activity appeared comparative to the last scan.  So Mom is still just holding her own which is still great news!  We had been worried because she was having a new pain around the liver area so there was some concern that things may have been progressing.  But everything looks good so we can breathe a sigh of releif until the next scan.  In the mean time I am going to work on being more optimistic about future scans and try to expect good results! 

Mom will be starting the Xeloda pills this chemotherapy cycle so we are hoping they are less destructive to her blood counts.  We really want her to be able to get away from having to take Neulasta/Neumega shots EVERY day.  For one, they are very expensive (insurance luckily pays for them) but it’s just very tedious to have to go to the hospital every day to get a shot.  It also means she isn’t able to travel out of Colorado at all.  Previously she was not able to take the Xeloda because they fall under prescription benefits and our annual maximum for prescriptions is $5000 (Each 10-day prescription costs $1000).  However, we had Dr. Kane call Aetna ask for a pre-authorization to overide our prescription benefits.  She explained to them that they could possibly save the thousands of dollar$ that they pay for daily Neulasta/Neumega shots if they would be willing to pay for the Xeloda pills beyond on pharmacy benefits instead of intraveneous chemotherapy.  They agreed to pay for them!  Well, that’s what they said but I’ve learned to wait and see.  But I’m feeling hopeful!  Mom starts the pills this week so I hope her blood counts stay high and she doesn’t have to get the daily shots.  It will really make a difference to the quality of her life to be off of them. 

Mom has been having some abdominal pain and we are concerned it might be her liver.  So Dr. Kane ordered a chest x-ray and Petscan just to try to figure out where the pain is originating from and to get a more recent picture of what’s going on.  The results from the last Petscan were good and showed no progression of the disease.  We are hoping for good news Tuesday since we are all getting a little worried and anxious.  It’s so hard to not always expect the worst! 

Mom has been tolerating the chemo pretty well still but the neumega and neulasta shots give her some pretty annoying side effects.  Her legs and really her whole body get swollen, she gets pretty lethargic and right now she is bright red with white spots.  She says she has the reverse chicken pocks.  :)  Poor mom, she is such a trooper!

Grams is recovering at home today.  She made it throught the mastectomy surgery without any problems yesterday and was allowed to go home.  She was very tired after the surgery but is feeling better today.  But she took some of the pain medicine and is doing her best to take it easy and stay in bed all day.  She took at least a week off but may take another week off if she feels she needs it.

Tomorrow, March 31st, take five minutes to join thousands of your fellow advocates in a phone blitz to Congress in support of colorectal cancer screening legislation.This legislation currently in Congress would create a National Colorectal Cancer Screening Program. Your phone calls could help make it happen!C3 has made it easy for you to call Congress.

• Tomorrow, simply dial 866-615-3375 and enter your ZIP code at the prompt.
• You will be directly connected to the offices of your Members of Congress.
• When your phone call is answered, you simply need to say, “I support the Colorectal Cancer Prevention, Early Detection and Treatment Act.” (Click here for a detailed script)
• At the end of your phone call, DO NOT HANG UP. You will be reconnected back to the Butt-In line, where you can direct your call to your remaining Members of Congress. Please be sure to speak with all three of your Members of Congress tomorrow.

The more calls that Congress receives, the better, so urge your friends, family and co-workers to join you in the Congressional Butt-In! Afraid you’ll forget to call tomorrow? Then use your cell phone now to text BUTTIN to 30644 and we’ll message a reminder to you tomorrow.

:(  Grams was diagnosed with breast cancer last week.  She had a small lump removed 8 years ago and we thought she was in the clear but she had a “smudge” on her annual mammagram.  Luckily her doctors followed up on it, did a MRI and took a biopsy.  It came back as cancer so we are waiting for her to meet with the surgeon on the 30th.  It sounds like they are leaning towards at least a mastectomy, but possibly a double.  I’m hoping they choose, or recommend that Grams gets the double mastectomy because she is 76 now and I don’t want this to return again.  What if it comes back and she is too weak to undergo surgery like in her late 80’s?  We should know more after the 30th.  She really doesn’t want to have to have any chemotherapy so hopefully that isn’t part of her treatment!  Good luck Grams!

I still don’t have anything too exciting to report.  Mom is doing really well and is feeling pretty good.  She had an awful week a couple of weeks ago.  They changed her chemo but I didn’t write the name of it down.  She didn’t get out of bed for almost 3 days until we made her go to the hospital to get fluids.  She couldn’t hold any food down, was clammy and feverish and scarily lethargic.  After that week she was getting winded very easily and it had us worried.  When they measured her oxygen level, she was all the way down to 82 and 88 is considered dangerous because you could faint upon standing.  The cause turned out to be a low red-blood cell count.  They gave her a shot of Aranesp to boost her count and she has been a lot less winded but she still keeps trying to do too much!! 

They lowered her dose of the new chemo and now she is prepared for the side effects so we hope the next round goes better.  Mom is still convinced it wasn’t the chemo alone that did her in.  She thinks she may have had a stomach virus which coincided with the new chemo.  Either way, we are just glad she made it through the rough week.  Even the nurses at the hospital said they were relieved that she now looks so much better and back to her self.  They worried when she looked so weak and exhausted!  They are used to her bubbly personality and always having a smile on her face. 

Mom got chemo yesterday but the doctors left out the Avastin for this round since she is having so many complications on it.  She’s really unhappy about the weight she has gained over the last year.  They are going to test her thyroid next week to make sure that isn’t the culprit.  It is potentially just the combination of medicines she is on but they want to rule out any other sources first.  She is feeling pretty good overall.

We finally met with the doctors and discussed the latest PetScan.  There is no new disease!  And the intensity appears to be the same or maybe even dimmer.  Whew!  So it looks like we are still holding our own against the cancer.  It’s not going anywhere but it’s not grown or spread either.  This has been the case through most of Mom’s treatment so we are pretty happy with it.  Although we would love for it to go away and for her to be cured, that’s not really the way this liver stuff works.  So we still don’t totally know why her CEA levels have been climbing but the doctor did tell us not to put too much emphasis on those values.  She said it is a very good indicator for recurrence when someone has been cancer free and other curcumstances but that it’s not a direct yardstick for measuring progression of disease.  We are very relieved because we got so worked up about the CEA levels that we really expected to hear that the cancer had spread.