Hi all - Never thought I'd be here

MelissaV

Hang in there Floyd! It seems a good sign that you feel like eating today. You're in my thoughts....Melissa
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ethan20 · Regular Joined: 12 Jan 2009 Posts: 25

Hey Floyd,
You probably don't remember me but my dad, Ron was diagnosed the same time as you were. You were one of the first people I talked to on here. I read your postings all the time and truly admire you for sharing your story and your positive outlook which I know is not an easy task. I just wanted to say thank you for responding when I needed to hear from someone. I pray for your health and think of you and your family often.
Christine

Adagio7780

I certainly try to remember all of the people and posts to this forum. It's at once good to hear from folks who have been posting for a number of months and at the same time sad that so many stories have run their course. To the ones who have lost loved ones but still share their thoughts and concerns here, well, it means a lot.

I feel pretty good today. Most of the problems from the latest round of treatment are tiredness and digestive issues, but I'm keeping the meals down and have some energy right now, and I'm looking forward to rocking on for a while longer.
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Man tracht, Got lacht (Man plans, God laughs)

mikeysangel · New User Joined: 03 Nov 2009 Posts: 2

my dad was diagnosed over a year ago. he's lost so much weight. he looks like a different person now. he has been in the hospital twice from complications. i just can't imagine anything worse than cancer. it changes a person and can steal them so fast

LittleMe · Regular Joined: 28 Sep 2009 Posts: 26

'You wonderful care givers will see a lot of changes in your patients, perhaps not all of them for the worse'

That made me Smile

. Just what I needed to read right now.

It's good to read your update and may you rock on and on and on and on and on...

LittleMe · Regular Joined: 28 Sep 2009 Posts: 26

'You wonderful care givers will see a lot of changes in your patients, perhaps not all of them for the worse'

That made me Smile

. Just what I needed to read right now.

It's good to read your update and may you rock on and on and on and on and on...

Adagio7780

Just a little update on the second cycle of the new treatment regimen, and I must say it has been much better than first. No digestive issues (yeah!) and feel pretty good, weak as ever, of course. Ate three meals today, although the first two were PWR meals (Plain White Rice). The avastin leaves me with a shocking response to touching anything cold for 48-72 hours, and I have to have all drinks at room temperature, but no big deal. On we go!
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Man tracht, Got lacht (Man plans, God laughs)

MelissaV · Posted: Thu Nov 12, 2009 11:45 pm Post subject: just to say hello

Hi Floyd: It is really good to hear from you. Glad you are doing o.k. I admire your willingness to experiment with new trials and drugs with hopes that not only you, but future pc patients can benefit from as well. My Mom was not so willing to do so, but that is o.k. too.

My Mom has her up days and down days. She had her blood work, and CT scans this week. I'm quite anxious about the results, but Mom just wants the tests to be over with so she can enjoy the remainder of her off chemo week. We should have the results next week.

She's always been so stong, but has sounded a bit tired and defeated lately. Our entire family will be with her for Christmas though, and we'll continue our trips out to Colorado regularly.

What are your plans for the holidays?

I hope to hear from Lucy too soon.

Warmest Regards, MelissaV
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MelissaV · Posted: Fri Nov 13, 2009 12:28 am Post subject: P.S.

One more question Floyd: If I may be frank, you mentioned that you don't have any "digestive issues" at this time. My Mom is having really bad ones. One day she is constipated, and the next constant diarrhea. She also has horrible hemorrhoids. Is there some advice you can give us to remedy this based upon any medications or therapies you've had?

Sorry to be so blunt, but I'm hoping you can provide some advice.
She isn't eating very well at all either.

Thanks, Melissa
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Adagio7780

Good to see the board back up - thanks to all who made that happen, whoever you are!

MelissaV, I'm sorry I couldn't get back sooner, but I did have the same issues as your mom, starting with constipation. I wasn't eating very much and so went several days and then took both a softener and a laxative, and that swung me far too much in the other direction. So I sent out for some Ammodium AD and had to take three dosages of that to stop the diarrhea, then it was really a few more days before I was back to normal. I would say to stick with one or the other and not try to 'catch' the symptoms. If she needs the AD, then take it and wait for her system to become more regular.

For the hemorrhoids, good old Prep H works for me although it takes a week or two for complete relief.

I now take Reglan before each meal and at bedtime, and it has worked wonders for me, so you might ask the doctor about that. As always, good luck and tell your mom I'm thinking of her.
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Man tracht, Got lacht (Man plans, God laughs)

MelissaV

Thanks for the advice about the Reglan Floyd. Mom and I will check into it.

It sounds like she did what you had done, and went overboard with the laxatives, then she too took Ammodium and has ended up where she began - constipated. I haven't spoken to her this weekend, because she is visiting my sister. I'll see how she is doing tonight.

Test results - blood work and CT scan - will be in next Wednesday.

Regards, Melissa
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MelissaV

Hi Floyd:

I'm very curious about how your new trial is going, and how you are feeling. Are you still on the "rat poison" mixture, and do you feel it is helping? I also ponder your comment about whether or not the Gemzar has really done any good. I fail to see any results in my mom either.

However, Mom is just recently taking generic version of Decadron steroids, and boy howdy, she is full of energy, and a little crazy. (In fact, my father took this when he had lung cancer, and started spending money on really weird stuff - like a case of sun tan lotion, no kidding - for example. I still have bottles of the stuff here after four years!) Anyhow, I don't know how to respond to this. Just let her have her super high?

I think I should let her feel good, and just enjoy this time? Lemme know what you think. Best to ya!

Have a wonderful Thanksgiving too!
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Adagio7780

Hi MelissaV,

The trial is going pretty well, although I had to stop the Xeloda a couple of days early due to 'hand/foot syndrome', where my palms and soles turned dark red (purple really) and it got very painful to walk. My next infusion of the other chemos is Tuesday, and I'm still on the dasatinib, which is oral. I was on steroids, same stuff as your mom, but came off of them about ten days ago. I cut the dose in half for a few days and then stopped altogether. I would absolutely encourage your mom to take whatever makes her feel good, there's really no danger to getting a long term addiction in our condition.

The routine that works for me is to take my Oxycontin, Oxycodone, and other pills upon waking in the morning, then I lay back down and listen to the radio for about 30 minutes before starting my day. That gives me a little jump start on feeling good before I shower and do breakfast. I'm still under the Rx dosage on the Oxycodone for the day, but I do need it for abdominal pain.

I suppose the Gemzar did what it was supposed to do by keeping the tumors from growing and lowering the CA19-9 levels, I just wish it could do it without killing off the hmg levels.

Hope you have a great Thanksgiving and thanks for writing.
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Man tracht, Got lacht (Man plans, God laughs)

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 19

Hello dear friends,

Although I haven't posted in a while, I have been checking up on you and am glad to hear that Floyd is doing well with his new treatment, and that Melissa's mom has gotten some of her energy back!

My mom continues to do well. We are having to deal with a financial side of her treatments a bit more lately. Not sure if I mentioned this already, initially mom didn't qualify for Gemzar therapy and was only offered some default palliative therapy by the insurance, back in early spring of this year. We have been paying for Gemzar ourselves, as well as for all the other tests, scans and everything else that accompanies such therapy.
In summer, my sister finally arranged for the cost to be carried by a local hospital and that took an huge load off my shoulders, however, as it is usually the case with yearly budgets, hospital's budget is exhausted and further treatment (through the hospital) is in question.
No matter how, we will make sure mom continues with the same therapy as it has been working very well for her.
She got results of the latest CT scan today. There's a significant shrinkage of the tumour at the tail of her pancreas, as well as a reduction of number of mets in her liver. They are still numerous, however, lot of them only appear to be scars from where mets have been.
Her CA19-9 levels are at 780, big drop from > 36,000 in spring of this year.
She's been showing a lack of spirit lately and I hope the latest results will help her get back and give her strength to keep on fighting.

I wish you all a great Thanksgiving with your loved ones!

Adagio7780

Well, in the 'Never Thought I'd Be Here' category, looks like I'll be celebrating another Christmas. This is a wonderful thing, of course, and given the 4-6 months prognosis in January and gives room for much hope for the future. I get my next CT Scan Dec 21, so results from that could be a good present (or not, I suppose). Coincidentally, we got the results from my very first CT Scan on 12/23/008. My liver enzymes are good from lab work yesterday, and the third cycle of this treatment is going pretty well. We'll keep you posted.
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