1

(4 replies, posted in General Discussion)

I missed a phone call. When I listened to the msg it was my radiologist.... Never a good sign. I sat down, took a few deep breaths and returned his call. He says SBRT is not an option. Between the colon and the duodenum there's too much risk. Plus, there's a couple very small almost not noticed lymph nodes that lit up in the scan also. So now the plan is lower dose broader beam radiation which will cover the entire area but hopefully not harm my good organs too much. Only good news? Originally he had said 5 weeks. Now he says 3. I just pray it works!

2

(27 replies, posted in Members' Cafe)

Dad has pneumonia. They are waiting for a hospital room for him. They will put him on antibiotics and hopefully get him back to the rehab center quickly. One good thing... May be what caused it, might be a result, but he spoke! In a very raspy voice, but it was speech! We hope this continues.

3

(27 replies, posted in Members' Cafe)

Well, dad was doing so much better.
Now he's in the ER after vomiting and having a very low oxygen level. The scariest part? My dad does NOT VOMIT. EVER. EVER. They have his O2 level back up and are doing a ct scan. Hopefully they find out why he vomited. Hopefully it's because his vocal chords are paralyzed and they allowed him to vomit. He has no gag reflex. I don't remember him ever vomiting in my 52 years on this earth. And believe me, I've seen him drunk enough for most people to!!
Meanwhile, I'm in limbo for another week. I just put in a request to meet with a social worker wed before my appt with dr. Meyer about radiation choices....

4

(27 replies, posted in Members' Cafe)

More good news today. They moved my dad to a progressive rehab center. He has regained a good portion of his right side, etc. but still can't hold a pen or pencil. And he still can't talk. They put in a feeding tube because his vocal chords are paralyzed open and there is damage to his throat so he can't pass the swallow test yet.
All professionals say the vocal chords should come back in a month or so. If not, the ENT guy is going to try something to get them moving.
I wish I could be there for him, but I know he understands I have my own fight right now. So we both fight on other ends of the country.

Lainy, I can only do the Statue of Liberty if I can be holding a really big egg roll! lol
Debbie, you sometimes just gotta be wacky to keep from breaking things! And Lainy helps us stay wacky.

Julie,
For my own comfort I would still want regular appts., at least for the usual 3 years or whatever it is.
But great news if they all concur!! Maybe you really DO get the brass ring on this merry go round. Wouldn't that be great?

Oh how I wish it was jello! That at least would be soft! lol
Actually they lay you on this surface. Inflate sides, etc. to "fit" your body. And it either stays filled or hardens. Can't remember. But my last one had a seam around my shoulder blade. Very bothersome!

Tomorrow afternoon is the simulation for radiation. Boy, I can't wait to get to lay in the mold they make just for me!! (Can you hear the sarcasm?) I just want to hear in about two weeks that SBRT is a go! I certainly don't want 5 or 6 weeks of that crap!

OH!OH!OH! I forgot! I get MORE tattoos!! At least 3 or 4!!!! Yay!

9

(23 replies, posted in General Discussion)

Lainy, you certainly do like to be different! I hope you have the pirate eyepatch bought? And just get the pirate hat to cover your head! Just make sure it's soft so it doesn't hurt.
Seriously, good luck with the surgery. It really does help to trust the doc. I know Teddy is watching from above, but I sure hope he doesn't send those lights blinking and scare your health team. Please, Teddy, wait until they are done. THEN blink those lights!

10

(16 replies, posted in General Discussion)

It's been a long day.  I found out there were THREE lymph nodes, but that's not that important. My onc and my radiologist both suggest radiation. The radiologist wants to do SBRT again, which bought me 9 or so months of no treatment a few years ago. His only concern is the nodes are close to my colon. If the colon gets SBRT radiation, it could be very bad for me! If he doesn't feel comfortable with the calculations, he wants to do 5-6 weeks of daily lower dose radiation. All I could think of was "there goes my new job!"
After radiation, we watch and wait. Meantime, dr. D has sent the biopsy to foundation one for genomic testing. And has put my name on the list for nivolumab (opdivo) which is the Bristol Meyers squib version of keytruda. If all goes according to plan (boy, I hate that thought!!) I will hopefully be accepted before the radiation has quit. Only problem with all this is I get to be a patient again. She wants to pair it with another drug that will make me feel like I have the flu.
Still, it's better than the alternative!!

Well, tomorrow is the big day. In a little over 12 hours I find out the results of the pet scan. I meet with my onc first and discuss options, choices, suggestions, etc. with her. Then I meet with my radiologist about the same stuff. I wish I could do the meetings together. It would make it so much easier.
After the month I've had, I'm BOUND to have some good news, right??
I haven't really had to be nervous for 2 years, since the trial drug was keeping things in check. Now it's time for fighting, nerves, questions, what ifs??
I'm hoping keytruda is an option. That and/or radiation.
So keep me in your thoughts tomorrow, and send some positive vibes my way if you can. I'd appreciate it.

12

(27 replies, posted in Members' Cafe)

My dad is walking with the walker and an aid!! If you had said I would be saying this today after I left Sat. morning I would have smacked you!
He's sitting up, using BOTH arms, and able to walk. And he was in ICU until Sat. Night.
One thing still...he can't pass the swallow test or talk well. They think a vocal chord may be paralyzed, but they say it often comes back. As for the swallow test... He can do apple sauce, ice cream, and ice but his throat will not react quickly enough to water. It goes straight down the wrong pipe.
I so wish I could still be there for him, but tomorrow is my big day.
I get the results of my pet scan and hear about suggestions and options from both my onc and my radiologist.

Maribel,
I was diagnosed in 2011 with unresectable cc. The tumor had wrapped itself around my vena cava and 2 of my 3 hepatic arteries were involved. Gem/Ox and FUDR shrank the tumor considerably, but due to other complications, I was never able to have surgery. I had to quit chemo for a while and cc spread so no surgery. I did sbrt radiation which worked fairly well for about 7 months, then was accepted into a trial. That drug worked for 2-1/2 years. Unfortunately the cancer had spread again so I am waiting until Tuesday to see if my onc and radiologist have any brilliant ideas. They are brilliant, so I'm sure hoping they figure something out. I have had one of the new areas biopsied for mutations, so hope to get that into the decision making quickly.
I'm sorry this is so long, but I wanted you to know that although surgery is the best option for all of us, some of us do get some good results with drugs and radiation.
By the way, I was a courier part time until last month... I just started working at Sam's Club part time (although this may prove too much), I play local poker games and sing karaoke. Oh, yeah, I'm single..... So I don't have a partner to worry about or to worry about me (good and bad points). But I'm pretty healthy, although I require more sleep than I used to.

Tiah, I was on similar... Gem/Ox with FUDR which is a little stronger than 5fu.


Good luck to both. I hope surgery becomes an option!

14

(27 replies, posted in Members' Cafe)

I travelled down to Alabama to be with my dad and brothers. My moms wishes are for us to spread her ashes on a sunny lake or lovely stream in North Dakota. The plan was to do it in June or so.
I was supposed to return home on Tues Jan 5. We woke up to find my dad had a stroke. He was in FICU until last night. He has gotten so much better in 5 days. But he is still unable to swallow water, and his speech, when there, is slurred and hard to understand. I believe his tongue was partially paralyzed. His right side was not moving at all, but he has regained movement. Still can't make a fist, but he's getting better every day.
I had to return yesterday to prep for my own dr. appt. on Tuesday. I was unable to stay to see him out of ICU, but my brother kindly sent a pic of my dad sitting up.
I made my dad promise to worry about himself and not worry about me. I said I would worry about me. He actually said promise to me. I know he will worry, but he has to focus on getting better.
My biggest problem with this, for lack of a better word, is that my dad hasn't been able to grieve for my mom. It was only 10 days. We had finally seen the old "dad" on Monday night. He was laughing and talking about him and Laurie (my mom) with fondness, not just lost sadness.
I don't know how long or hard his journey is going to be, but I know it's going to be months. As I sat alone with him Tues. I actually thought he wanted to go. He kept looking above me and mouthing mom. I told him he had made me strong, and told me to keep fighting. I wanted him to keep fighting, but I also understood if he was talking to mom. I said I wanted him to be happy more than anything. With that, he gave me a clear stare, I saw his eyes soften, and he went to sleep. I was terrified he had picked the "happy." But he ended up picking the fight.
I know this is long, but I had to get it off my chest. As I write this I am crying like a baby for my dads lost love of 57 years, and the fight he chose in order to stay with us.
http://s21.postimg.org/w7ndpfm4z/image.jpg

15

(27 replies, posted in Members' Cafe)

http://s9.postimg.org/8j6yx611n/image.jpg

A pic of my mom from a couple of years ago.

http://s21.postimg.org/43f7voweb/image.jpg

And me and mom the year after I was diagnosed (2012)

16

(27 replies, posted in Members' Cafe)

I know I should be happy I'm alive, and trust that God has a plan, but this has been the worst month ever for me.
I found out on Dec. 15 that the cancer has spread, causing me to be kicked off the trial I was on, and making me have to go through a biopsy again and all that entails. I could live with this, having been through it twice before. It's stressful, but it, unfortunately, is expected.
To make matters worse, a good friend of mine and my mother were both put on hospice this month. My friend, Maria, died Christmas Eve morning from kidney failure due to pancreatic cancer, chemo, diabetes and who knows what else.
My mom passed away a little over an hour ago, 1000 miles away. She was recently diagnosed with dementia.
I think God believes I'm much stronger than I want to be.
I don't know what to do. I can't think. I can barely breathe. I am broken.

Sherri,
Thanks for that info. I know Oxaliplatin is too toxic for me, so maybe that is an option.
My ca19-9 is still at 40, so it hasn't gone up. My bilirubin is also only .6. None of my blood work levels have changed much. So I'm not sure why it's growing and spreading, but it is... Hopefully I find something soon!

Well, here I am again in the patient role. I really enjoyed the 2-1/2 years of being a pill popping chronic illness patient. Now to get back to fighting again.
The last ct scan showed new growth in lymph nodes and indeterminate "lights" that are too small to guess at. So the work begins.
First, I am off the clinical trial. I did post that part on my clinical trial section.
In the past 24 hours I was given the bad news, met with my radiologist, received calls from my onc today about trials, scheduled an ekg for tomorrow, a pet scan for Friday, and a biopsy for Christmas Eve morning! I'm tired! I forgot how much time this takes. And I start a new job tomorrow afternoon. First day on the job... Oh, I'm sorry, I need some time off... Great timing, huh?
On top of that, I've been overwhelmed with a good friend on hospice. I've been fighting a cold so haven't seen her the past few days, but she's fading fast.
And my mom was just put on hospice in Alabama, too far for me to help. And I won't be there at Christmas because of my new health issues and the new job. I told God that his timing sucks.
I've spent most of the day on the phone setting up appts. and need to get my calendar book up and running again, I guess.
I still feel fine, and at least I get to look forward to finding my ankles again! And losing the puffy eye look. Such an attractive look!
We are looking into trials or radiation first. Gem/Cis will be the next option. Gem/ox is my last choice because I still have a bit of neuropathy so I figure I won't handle too many infusions. Dr. Denlinger is looking at 5fu paired with other drugs. We'll see what she comes up with. She's also reaching out to MSKCC and Georgetown for suggestions.
That's all for now. My big girl panties are on and I'm lacing up the gloves.

All in all, I consider my time on this trial a success. It bought me 2-1/2 years of pretty darned good health. That's 2-1/2 years of research breakthroughs too. I think I was the longest lasting on this drug.
I've almost forgotten how to be a cancer patient, but I'm sure I'll remember pretty quick. I already got the gut punch... Now for the testing and waiting... Then a plan. And there's so many new options that weren't out there 2-1/2 years, let alone 5 years ago.
I do have to say I'm looking forward to getting my ankles back! And losing the puffy eye look!

We knew this day would probably come, but it's still a shock. I am no longer in the clinical trial.
Disease progression to two new lymph nodes. Possible progression elsewhere, but ct scan is not definitive. The plan is to get a biopsy of the new area to see what kind of mutations have occurred. This is #3. Also to get a pet scan to see whether the little lights are cancerous or not. Hopefully they can figure that out. If the little lights are from the cold I'm dealing with or something else, then I have the option of radiation again. It takes 4-6 weeks to get the genomic testing done. If radiation is not an option, I'm praying the mutations would still allow me to try to get on keytruda. If not, we look elsewhere. Either a trial, or (and I said this would be my last choice) gem/Ox with 5fu. Oxaliplatin kicked my butt the last time so we know I can only get about 3 rounds before I have to stop.
That's it. As you can guess, I'm pretty much a mess, but determined to put my big girl panties on again. Time to become a cancer patient again. Ugh!

21

(7 replies, posted in Members' Cafe)

Glad you got together! I've tried having luncheons in this area in the past... There's quite a few around here... I should try it again.

22

(209 replies, posted in Hospitals)

I guess I should update this.
Started April 2011 at Memorial Sloane Kettering. Dr. Kemeny was my onc and Dr. Fong was my surgeon.
Surgery was cancelled completely.
In 2012 I went to Fox Chase for SBRT radiation with Dr. Meyer.
In March 2013 I transferred my care to Fox Chase with Dr. Denlinger and began the trial I am currently on.
I never was comfortable with Dr. Kemeny. I am much happier with Dr. Denlinger.

Hi everyone. Long time no update. I was having so much fun being "normal" this summer! But, like the summer passes, so does feeling "normal". My latest scan shows a slight increase in the targeted lymph node. It's slight, but it's an increase. So it's back to being a patient!  I'm now on cycle 31! Yep, I said 31!! And I'm hoping the node stops growing so I can stay on the trial. Now I get to deal with scanxiety again.
All in all, I'm still doing good. Except for that nasty lymph node.

24

(5 replies, posted in Members' Cafe)

KrisV, I think it's a great place! You picked a fine spot for you, and him. My request is to be scattered down a waterfall so no one quite knows where my ashes go... And I can fertilize the flora and fauna.

25

(19 replies, posted in Members' Cafe)

Duke, sorry about your sister. There are lots of places to find support for breast cancer. Based on her location, the clinic she goes to May very well have its own support group. Around here is a big support organization for breast cancer survivors. Her onc might know.

I know it's not the same, but my brother has diabetes, and is a bad patient. The other day he told my mother he is tired of the pain and would rather just not wake up one day.... I understand and wish I was closer than 1000 miles away.