Hi all - Never thought I'd be here

Adagio7780

Mid-cycle treatment today went about as usual. Appointment was very late in the day so that was a drag but at least we didn't have to get up early. (It's a 2-1/2 hour drive each way.)

Lab numbers were good except for that pesky hemoglobin. 10.4 last week and down to 9.6 before treatment today. This is getting pretty low. Because I cannot receive treatment if it is below 9.0, I will have lab work done Monday here at home just in case it continues to drop. Skip week might come early. Otherwise all is well.

My fatigue comes on 48 hours after treatment and lasts about 36 hours. So Thursdays and Fridays are dreadful, but I start to feel better Saturday. I just have to be careful to not overdo anything. Really light schedule Sat, a bit more Sunday, and a little visiting out Monday is as far as I go.

Tell your mom I'm thinking about her, hoping for the best for her and everyone here.
_________________
Man tracht, Got lacht (Man plans, God laughs)

georgie430 · Regular Joined: 02 Jul 2009 Posts: 47

Floyd,

Hi, just wanted to tell you that I admire your spirit!!!
I truely do, and feel you have more of a postive attitude
towards life then most people that are not sick, or really
sick, like me.
My dad died of PC at 49, 4 yrs ago when I was 43, I was
wrongly told I had PC, well I fell apart, with a 18 mth old daughter
who needed me.
I go for testing now once a yr, because the tests and stress...
I fell apart, It is warming to know that you have a family that
love you and support you. After awhile, my daughters father
started making fun of me, so I will say this, What they found
after many tests, several of each, eus, mrcp, mri, ct scans and
a few ercp's, which can make a rather sensitive area worse
was chronic pancreatitis- I never was a drinker.

Once I started caring again and felt I was better off financially
insecure but more emotionally secure and confident for my daughter
and myself.

I truely feel for you because #1 you sound like a great person and two, you really paid attention to what went into your body. I do believe
your getting the real deal with the gemzar, because of all your sides.

Floyd I will ask my congregation to say a pray for you this Sunday.

Enjoy your camping trip!!

georgie439
_________________
"going thru these very rough times have made
me WAKE UP, I know this sounds cliche, but
don't want to go back to sleep" !!!

brainman

Floyd, just want to give you my encouragement too. I have been following your story since you first posted. I too have a great admiration for you and for everyone who fights Pancreatic Cancer because I realize how devastating it can be. I always say that of all of the major cancers, Pancreatic Cancer is probably the worse because of how devastating it can be to the person's quality of life.

I know that you have not been a member for long, but one on my best friends on here and the only one from here that I have ever gone to visit his family at his funeral died due to Pancreatic Cancer. Martin was an inspiration to us all. You can read his story on his blog http://diehlmartin.com/cancer.html

God bless you and keep you,
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
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Adagio7780

Well, the old hemoglobin continues to fall. It was 9.6 before the mid-cycle treatment, and my energy level went into a tailspin after that. Lab work before the third treatment of the cycle showed 8.5, so no treatment was given and I started on a non-prescription iron pill. I felt much better as the week progressed and even put in a full day of work Monday. Then Tuesday (today) I had my skip-week labs done here at home, and to my surprise and discouragement my hgb had dropped to 8.3, although my White Blood Cell count and platelets had recovered to the normal range. Of course, I'm hoping that I haven't reached the point where the Gemzar has to be stopped, because it's doing a decent job of keeping my CA19-9 (tumor marker) low and the pancreas tumor in check. The doctor here said that hgb could take 6-8 weeks to recover to normal range if the chemo was stopped completely, something he doesn't recommend. Perhaps by next week, the scheduled start of cycle 8, it will have rebounded. As always, thanks for the thoughts and prayers.
_________________
Man tracht, Got lacht (Man plans, God laughs)

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 19

Don't get discouraged now Adagio, surely there are better options than stopping the treatment. Give the iron pill some time to show effects and get plenty of rest in the meantime.

My mom's levels aren't that low, 10.4 at the last count, but enough to leave her breathless all the time, she's mostly fighting it with iron supplements, plenty of rest and iron rich foods.

Hang in there and as always, thanks for keeping us posted, I check in here regularly to see how you're doing. My family and I get a lot of encouragement and strength from reading your updates.

God bless you

kbosz · Regular Joined: 18 Jun 2009 Posts: 14

Floyd-

I've been reading your posts for a little while now, and I'm very sorry to hear of your setback. I hope that it is only temporary. I'll keep my fingers crossed for you. Best wishes

Kevin

Adagio7780

Just got back from Duke for what would have been a mid-cycle treatment. It was decided last week that all further Gemzar treatments would be at 75% of previous levels. I had that dose plus the study drug last week, and had the usual side effects plus a splitting headache that lasted from Wed to Sat night. The headache was the worst. My blood pressure base-line (back in Feb 09) was in the 112/58 range and has steadily climbed to the 160/90 range, and the doctors think that could be causing the headache. However, when the side effects wore off by Sunday morning the headache was gone, too, even though the bp was still high.

My numbers today are: HGB 8.7, Hematocrit 26, BP 170/90. In light of a vacation I've got scheduled for the middle of September, it was decided to suspend all treatments until I get back to Duke on Sep 29. Hopefully that (and the new bp prescription) will allow me to recover to more normal levels so I can get back into treatment for the fall.

I pass all this along, of course, as a little more grist for the mill as each of you make your weighty decisions, and it sure is good to hear from you as I struggle with mine.

Happy Labor Day!
_________________
Man tracht, Got lacht (Man plans, God laughs)

tysydkee · New User Joined: 30 Aug 2009 Posts: 2

Hi Floyd, My name is Joelle and my mom was dx with Stage IV Pan. with mets to her liver in aug. 2008. She was given 4 months and is still around and doing really well. She was also on gemzar and tolerated it very well. After her treatment was over they put her on an oral chemo which she did not tolerate well so she was taken off. I just want you to know that the docs are not always right and I wish they never gave her the 4 month time period because I just kept waiting for the worst and it never really came!! Please think positive!!!!!!! Please let me know if you have any questions. Oh my mom is 67.

Adagio7780

Wow, that's very encouraging - thanks for writing! I've been off the gemzar now for a couple of weeks and will not resume until Sept 29 due to low hgb and a planned vacation. BP is still high for me at 150ish/90ish but has been stable for a week or so. Please tell your mom I am pulling for her, and keep me posted. Thanks again!
_________________
Man tracht, Got lacht (Man plans, God laughs)

Deanna1 · New User Joined: 26 Jul 2009 Posts: 6

My Mama is currently being treated at Duke by a team of Drs. I am not quite sure that I'm happy with the treatment she is receiving. The exploratory surgery went bad then another after 19 days was performed. After 4 months on a "wound vac" Drs at Duke look confused........

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 19

Floyd, how are you doing now?
Is your blood pressure any lower now that you've been off Gemzar for a while?
Are you noticing any difference overall?
Hope you're still going on that roadtrip as planned. If so I wish you have a great time!!
I'm visiting my mom in a couple of weeks, it has been a long six months... I am very much looking forward to it!

All the best

Adagio7780

Hey LucyInTheSky.
BP might be coming down a touch, from 150/96 to 140/91. Just started a new bp pill.

I feel pretty darn good overall, but still get fatigued very easily. Not much pain, a little abdominal occasionally.

Did you say road trip? We left Charlotte, NC this morning at 0745, flew to Denver, CO and rented a car, and I'm now about 15 miles from Mt Rushmore in SD Wink

We will be touring from here to the Redwood National Forest over the next two weeks.

Hope all is well with you and you have a good visit with your mom. Thanks for writing.
_________________
Man tracht, Got lacht (Man plans, God laughs)

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 145

A7780:
Sounds like you are still battling tough ............good for you.

Just reading the last page of posts...........have the Drs discussed or have you tried transfusions to help raise the HGB level quickly?

It was used a couple of times with my Mom......early on it had pretty dramatic (positive) results..............less so later on but that's another story.

Keep Fighting

MelissaV

Hi Floyd: I must first tell you that you are an inspiration to all that post to this site!

I've been just looking at your posts for the past eight weeks since my Mom, who just turned 70 in April, was also diagnosed with stage IV Pancreatic Cancer. She lives in CO, and it is hard to believe she was just skiing the mountains of Steamboat in February. She was not feeling well, and jaundice and was at first told she was a likely candidate for Whipple, but after a trip to MD Anderson where a spot was detected on her liver the surgery was no longer an option. It has metastasized to her liver. She too is very tired. You may also be very tired from the lack of oxygen up in those mountains, Yikes! Even I have a hard time moving around out/up there!

I am her oldest daughter who lives in Chicago, and my brother is in San Diego, and my Sister lives about an hour away in CO too. We asked Mom what she wants to do given her not so great prognosis. She said she wants to be with her family as much as possible. So we are booking up our time visiting her, and last week she flew out to visit me in Chicago, along with my sister her husband and kids. She is a real trooper, and continues to go, go, go...

She is very concerned about her quality of life. So far her first three series round of Gemzar have been tolerable for her. I don't know the outcome of her statistics yet though.

I don't mean to ramble on, but this is the first place I've felt comfortable discussing her illness without having a complete meltdown. We just love her so much. She's our Momma.

Warmest Regards, Melissa
_________________
Looking for inspiration

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 145

MelissaV:
You and your family are already doing one of the BEST things..........spending lots of time with your Mom away from treatment stuff.
It is very easy for the battle to consume every minute of the day - if not actively going to Dr appts, then it's waiting for test results, etc.
So it takes conscious effort to schedule fun stuff or just be spontaneous...........and distract the person away
Some days it might be quietly sitting in a park when their energy is low and another day it will be getting on a plane to take advantage of a week off. Do not wait for the "perfect" time.............just make each day, hour or moment available better.

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