Dulcimergal

denise1966 · Regular Joined: 18 Mar 2008 Posts: 33 Location: Michigan

I was just reading all the posts and wanted to say hi and see how you are doing? Last I spoke to you was after your reversal. I hope everything is getting a little more regular. I still have 3 more chemo treatments left. The doc took me off of the oxaliplatin (my hands were tingling too much) so I'm only doing the 5fu pump for three days. Then I have my CT scan. Have you had yours yet? I hope it went well. Did the doc do another CEA test on you after chemo? Look forward to hearing from you.
Denise

REB · Posted: Thu Jan 08, 2009 11:15 am Post subject: Re: Dulcimergal

Hi Denise,

I had my last treatment last April and I still have some numbness issues in my hands and feet. It is getting better. My doc said expect it to take a year to go away.

I remember counting off those last 3 treatments. I was starting to feel really weak from them at that point, but I didn't care. i was so happy to be almost done with them.

I think the pump was my least favorite thing about the treatments. I hated not being able to shower for two days. As soon as they unhooked me, I went home and jumped in the shower. Smile

I have been doing bloodwork and PET scans every three months since I finished chemo. I am guessing you will do something similar. We have had to argue with the insurance about the PET scans. They only want to cover them every 6 months. After April, I think I'll just have them once a year. I am always nervous when I have them.

You are almost done. I pray your scans are all clear and you can soon put this whole experience behind you.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

denise1966 · Regular Joined: 18 Mar 2008 Posts: 33 Location: Michigan

Thanks for the reply. My numbness is going away, but I've noticed my hands are sore. It seems like work to make a fist (although through the day they get better). Were you sore or just numb? It just seems like a funny side effect.

Boy, do I know about not liking that pump, all I want is to take a shower or a bath when I'm hooked up.And the closer I get to the end the more I hear that whirring noise it makes all night...I think I'm just anxious to have it all over.

Great to hear from you and I'm really glad all your bloodwork and scans have come back good. I can only hope the same is for me.

Denise Very Happy

REB · Posted: Thu Jan 08, 2009 1:13 pm Post subject: Re: Dulcimergal

I did get muscle soreness all over my body accompanied by lack of strength. It was really bad during the last few treatments on the night of the treatment. The last couple of treatments I could hardly walk. I was usually better the next day.

I think that is different from what you are describing. I hope you don't go through that. My hands were so numb I can't honestly remember if they got sore.

Listening to that pump all night...ugggg. I don't miss that. And the taste in made in my mouth the whole time. I don't miss that either. By the 3rd day the needle and tape were itching. I couldn't wait to get unhooked LOL.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

mike3 · Regular Joined: 03 Jun 2008 Posts: 29

Hey guys

I'm having the same problem with the hands and feet. Num bum clubs.

I also had problems with insurance and the pet scans.

That pump was the worse, by the time I went to get that off I was feeling pretty beat.

Take care
_________________
Rectal Cancer Diagnosed May 30th 08
Stage II, Surgery June 18th
6 weeks of Radiation and 6 Months of Chemo to follow.

DulcimerGal · Posted: Thu Jan 08, 2009 11:12 pm Post subject: Re: Dulcimergal

Hey Denise, Mike and REB

great to hear from you. I did Xeloda only - no pump - I lOVE my insurance its expensive stuff but not having to be hooked up to infusions and pumps was the bomb. I finished four days before Christmas. Had terrible problems with my hands and feet, my hands felt swollen all the time, the skin cracked and I had a really bad rash on the back of my hands and up my arms. My feet were the worst, they were so sore it hurt to walk. At one point my Oncologist made we wait longer between treatments, but at the end - I just sucked it up and didn't let him know how bad the last round was, I just wanted to finish and really ZAP it big time! Now that I'm finished I am much more regular and have way better control of things. I am back at work full time and I feel stronger each day.

CAT scan will not be until the end of this month. I am so praying it will be clean. I see my surgeon next week, and then my oncologist on 2/6 to go over the scans.

I have also booked a trip to San Francisco in February - I was diagnosed on 2/14 last year and my birthday is 2/19 - I spent that day last year sharing the bad news with the folks who work for me. This year I'm planning on having FUN!

I'm still not able to run properly so REB I am jealous you are doing so well. All I can croak out is a very feeble jog for short periods....

Denise are you back at work?

WE are SURVIVORS! Congratulations to all of us -

Cheers and HUGS!
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

denise1966 · Regular Joined: 18 Mar 2008 Posts: 33 Location: Michigan

I'm so happy that everyone is doing well. I have decided my new years resolution this year is to exercise more and just plain old have fun. After going through everything last year, I think we all deserve it.

My body is getting used to the reversal more and more everyday, except it still does have it's moments every so often, depending on what I eat. Having the chemo every two weeks doesn't help either, but it's almost done. My last disconnect from the annoying pump is Feb. 13th, so I'm hoping to celebrate a nice Valentine's day as the end to all this.

My onc. never offered me the Xeloda pills, even though I have great insurance, that I'm sure would have paid for it, but oh well, it's almost over and hopefully the little noisemaker did its job. My bloodwork has been coming back good and my last CEA level was .2 hopefully it stays that way.

Dulcimergal, I hope your CT scans come back as clean as a whistle, I look forward to hearing that news from you. Are you having a colonoscopy too? Glad to see you're back at work. I work from home and have basically worked a little through everything, more on days I feel better. My only issue right now is the soreness of my hands, but if that's my only problem, I'll take it.

I hope you have a great time on your trip...you deserve it!!!

Mike, are you finished with chemo? Did you only do the pump? or FOLFOX? have you had any scans done yet? I hope you're doing well also.

Reb, how much do you run? I live in Michigan, so I'm only on the treadmill inside for now, not a whole lot, but trying.... I look forward to going out this spring.

Have a great day!

Denise Cool

Rotorhead · Regular Joined: 04 Jun 2008 Posts: 41 Location: Hawaii

Haven't checked in for a while. I finished up treatment in September 08. I had my first post-treatment CAT scan in december (clear) and will get 'scoped in Feb. So far, so good!
Aloha
RH
_________________
Diagnosed Stage 3 rectal cancer Nov 07
6 weeks chemo/rad Dec 07/Jan 08
Surgery (TME) 11 Feb 08
6 months FOLFOX started March 08
My blog: http://rotorheadsblog.blogspot.com/

denise1966 · Regular Joined: 18 Mar 2008 Posts: 33 Location: Michigan

Congrats on a clear scan, I always like to hear that. Hope your scope is clear too and you can get on to having a great 2009.
Hugs,
Denise

REB · Posted: Mon Jan 12, 2009 8:56 am Post subject: Re: Dulcimergal

Congratulations DulcimerGal. You are healing now so take it easy. I am not completely healed, so it takes a while. My stomach is still very tender where they cut me. I am still having numbness issues(getting better). I think it might have effected my memory. But I get stronger every day and you are too.

Praying that your scans will be clean. I know the feeling you are going through. I get it every time I do a PET scan.

Denise, you are almost done. I was so happy when I reached your point. I felt like crud, but I was so happy to see the light at the end of the tunnel. That gave me strength.

I have not been running lately. It has been too wet or too cold (for me anyway Very Happy

What you in Michigan think is cold and me in the semi-tropics of south Texas are probably different).

Congrats Rotorhead!
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

sheila · Senior User Joined: 24 Jul 2008 Posts: 265

glad to get an upbeat feeling reading these posts sounds like 2009 is starting off fairly good for you guys- glad you guys came back on with mostly good news-keep positive-thoughts and prayers are still with you all.

mike3 · Regular Joined: 03 Jun 2008 Posts: 29

Denise

I didn't finish the chemo. I have a history off brain hemorage's. I started having problems so we stopped the chemo.

I did 11 treatments but some were half dose during radaition. So bottom line I did 7 out off 12. I had Xeloda, oxaliplatin, and the pump.

I did have a pet scan and it was good. I'm doing good just the hands and feet are num...I hope that goes a way.

Thanks
Mike
_________________
Rectal Cancer Diagnosed May 30th 08
Stage II, Surgery June 18th
6 weeks of Radiation and 6 Months of Chemo to follow.

REB · Posted: Thu Jan 29, 2009 8:14 am Post subject: Re: Dulcimergal

Hi Mike,

I hope your PET scans stay clean.

My numbness in my hands and feet is slowly getting better (Or I am just getting used to it). My doctor said it can take a year for it to go away after the treatments stops. That will be in April for me.

I am having gallbladder issues. I don't know if it is related to chemo. I do know my spleen got enlarged during chemo, but returned to normal when I was done.

I have a PET scan today to check for cancer and a CT scan on Monday to check my gallbladder. I'll find out what is going on on Tuesday.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

denise1966 · Regular Joined: 18 Mar 2008 Posts: 33 Location: Michigan

Dear Mike,

Congratulations on a clean pet scan, that must of been a great load off your mind. I hope it stays that way for you. The numbness in my hands has gone away, but my fingers are now sore and hard to bend, I'm hoping this goes away soon. I noticed when I'm on my treadmill the bottoms of my feet feel like I have pins in them, but it's only then, not when I'm just normally walking. I have hopes this will go away soon too.
How long after chemo did you have a pet scan? Did you do a CT scan too?

Reb, I'm sorry to hear about your gallbladder issues. My husband just had his removed last month. He wasn't feeling good for weeks and it was just getting worse, so we went to emergency, they did an ultrasound, but didn't find anything abnormal, so they sent him in for a HIDA scan and found out his gallbladder was working only at 7 percent, so off to surgery for him. Thank goodness it was on my off chemo week...lol!
Best wishes for you on your pet scan today, let us know how it goes, and the same for your CT scan.

Dulcimergal, How did your CT scan go? We all had surgery about the same time and I'm still going through this chemo....I want it to be done!!! Well, I guess it just about is...1 more treatment after this, I get my last disconnect 2-13 the day before Valentine's, so 1 more reason to have a nice dinner.

XOXO,
Denise

denise1966 · Regular Joined: 18 Mar 2008 Posts: 33 Location: Michigan

Thought I could use a cute avatar too! Laughing

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