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What's going on with me?

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

Well, it is holiday season, and I had a couple of things planned:

1. Trip to Cincinnati for a farewell dinner with former coworkers and customers, all of whom I think of as friends, on Dec 2nd

2. Trip to San Francisco to attend the company Xmas party Dec 9th

Of course any planning had to include a couple of days for therapy, and I had that all figured out.  Well, I did, but I forgot that the oncologist would be closed on the Friday after Thanksgiving (my normal schedule was every other Friday).  So, that date with the needle got moved to Nov 30th, the day before my flight east.  Small problem, but an easy solution; get the usual dose of Erbitux and skip the Irinotecan!

It was a great trip out, got my last status upgrade to first on the plane, and at the hotel (the Hilton downtown), when I explained this was my last trip, they upgraded my room from the storage closet to a suite!

The flight had kickstarted the lymphedema in my left leg, but it was mild and tolerable.  

I'm happy I did this, Cinci is a beautiful city, and I had an opportunity to see lots of faces that I have worked with over the last decade.  Dinner was particularly special, with at least one guest who flew from San Francisco to be there, needless to say, the evening touched me deeply.

The flight back had no upgrade, but the exit seat had plenty of legroom, so I cannot call it an unpleasant experience.

Two days after my return I developed a fever, then a pain in my right inguenal node, followed by a swelling of my scrotum.  I immediately called the oncologist and arranged for a PET/CT prior to our upcoming appointment.  I also cancelled the trip to San Francisco, as my level of discomfort seemed to be increasing daily.

As I feared, the scan showed growth in my affected nodes, as well as several new infected nodes, including the aforementioned right inguenal.  After looking at the report my oncologist said I had used up all of the traditional treatments, and it was time for me to try and get into a trial with Dr. Lenz's group at USC.  I have also made an appointment with UCSD Moores to increase my odds of finding a good trial.

My pain kept getting worse, so I started using the oxymorphone tablet at my disposal, eventually going to the pain guy, who bumped me up over 100mg a day.  

Then came the constipation, and pain that compared to the APR last January, even with the pain drugs!

Two trips to the ER, one on the 21st and the next on the 22nd were enough to get me admitted, and for them to start iv infusions of hydromorphone, as well as a variety of softeners and laxatives.  

On the 26th they sent me for a barium X-ray, and that foul liquid finally broke me loose, whereupon I realized my other pains were as bad, if not worse, than when I came in.

Solution?  The pain specialist implanted a pain pump in my hip, bathing my spine in 4mg of morphine every day, plus a remote control to provide a bolus for breakthrough pain. I was released from the hospital on the 28th.

I feel much better, though the lymphedema remains debilitating, and the surgery pain makes sleeping difficult (I'm a toss and turn sleeper).  I am able to read, watch movies, play with the cats and talk with friends/relatives, all things that were beyond me for that week or so around Xmas.

Oh, despite fasting for most of the month, I have gained about 25lbs.  

Wishing you all a happy New Year,

Blake

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Blake, i have no words,other than i am so sorry you are going through this. i am praying for you and angry for you. damn it i hate this friggin disease .
judy

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Blake,

Sorry you've been through the wringer! I hope and pray the new year will be better for you. Man, oh man!

You take care of yourself,
Lisa

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Sorry you had such a rough time in December. I hope the new year brings some changes for the better and things get easier on you!

plh4gail

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

but am really sorry to hear the rest of your news. F'ing cancer...hate it so much. My biggest new year's wish for all of us is better health and a break from pain and suffering. Ann

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Blake,

I suspected you had been through alot, room 320 on xmass day, well enough said.
I hope the pain pump works and gives you relief, sounds like its helping now.
I hope you get into a trial and it helps.

Its a little ironic, you gaining weight while fasting
and well i have lost wait while eating much more. I did not want to fall below 90 kg and this morning i was 88.4kg.

I hope you enjoy your new years eve.

I am wishing you just a happy today.

hugs,
pete

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Thanks for the update Blake. Sorry for the pains. Glad "Auld lang syne" had a chance to catch up.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

is send you hugs from across the pond. And hope things get stable for you, sorry your going through so much right now.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Sending you good vibes and hugs from here!

janie1
Posts: 753
Joined: Apr 2011

Best to you Blake, with either USC, or UCSD.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I was at Scripps Green but went to UCSD Moore for some extraneous issues that popped after AFTER I completed treatment. Cannot speak highly enough of them. Intelligent and caring describe the professionals who cared for me.
Let me know if you go that route. I have friends in the SD area with vacation homes that may be of use to you.
Very very sorry things are so rough......

lauragb
Posts: 370
Joined: Aug 2011

Sorry for what you are going through. Here's to a successful trial in 2012.

Sending light and prayers your way.

Laura

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

I'm so sorry to hear that you are in so much pain. I hoping that the pain meds. are helping and that the swelling has started to go down. I'll be praying that things get better for you and that you get into the best possible trail.
Karen

Annabelle41415's picture
Annabelle41415
Posts: 6711
Joined: Feb 2009

So sorry to hear all that you have been going through. When you said you were in the hospial I'd thought you told us you weren't feeling well earlier and just missed the post. Golly you have been through so much. Glad that the pain has eased up someone and hoping you can get into a trial soon. Happy new year to you as well.

Kim

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

To everyone for the care and concern. We have a recommendation for a place that treats lymphedema, and my wife has found some Velcro wrap compression stockings, so I may be able to treat that starting next week.

Pain is still bad, I almost couldn't get out of the shower tonight....

Happy new year,

Blake

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Blake,
Thinking about you as the New year rolls in ( 15 minutes ago in Hawaii). I pray you get relief from the pain and a plan with Dr Lenz

Aloha
Kathleen

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

So sorry that you continue to have pain.

Hoping that the compression wraps help out and that you can find treatment for best resolution.

May the New Year get only better and better for you.

Hugs,

Marie who loves kitties

P.S. in case you need any additional resources on lymphodemia here is a web page that may give you some help:

http://www.lymphnotes.com/index.php

janderson1964
Posts: 2215
Joined: Oct 2011

There are 2 targeted therapy drugs on the fast track for the FDA to approve this year (2012). Below is a link to the first drug. The second drug is produced by Bayer called Regorafenib. They say this drug had surprising results and was put on the fast track for approval. You can get more information on this on the Colon Cancer Alliance website.

http://www.sanofi-aventisoncology.com/pipeline/aflibercept.aspx

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I hate hearing about this, Blake...it sounds really painful from your description. I don't have any advice here, but sure hope you can find something that will work.

-Craig

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

I'm so sorry you've had such a crappy time of it. Hopefully the pain pump will bring you relief. Not familiar with lymphedema but it sounds awful.

Wishing you the best as you move forward getting things under control.

Hugs - Tina

wolfen's picture
wolfen
Posts: 1329
Joined: Apr 2009

So sorry to hear that this dam! crap won't let you be. It sounds so miserable. Hoping a new plan of action is coming up soon and that this pain will get to a minimum immediately.
Also wishing you and yours a much better New Year.

Luv,

Wolfen

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Hey, Blake.

I'm really sorry about all the pain and swelling and such. You've been having such a rough time! I hope the compression wraps will help some.

*hugs*
Gail

relaxoutdoors08
Posts: 520
Joined: May 2011

Blake,
Hope you will be able to find a good treatment plan at your next appointment. In the mean time prayers for your comfort. Thinking of you.
NB

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