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Good News Story

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

I want to share this with other PPC survivors! Yesterday for the first time I met someone else who has PPC (face to face I mean, not online!) and she is a 7 year survivor!!! She has had many treatments and for the last year has been clear and no treatment necessary. She looks wonderful and was inspirational to me! I am just coming up to one year since diagnosis. When initially diagnosed I made the mistake that many of us make and did the Google search and got massively depressed until I found this and other similar sites. I feel it is so important for us to know that there is lots of hope out there so wanted to pass on the Good News!
Love and blessings to all,
Julie, Australia

dorothymarion's picture
dorothymarion
Posts: 28
Joined: Apr 2012

I can understand why you felt so buoyed when you met a 7 year PPC survivor!! Like you, when I was first diagnosed almost two years ago, I made the mistake of researching my particular cancer online, as I knew so little about PPC. The overall info I found was depressing, so I decided instead to focus my attentions on the treatment and care I was fortunate enough to find at my cancer treatment centre.

Every day that I can wake up, put my feet to the floor and say "Good morning World" is a good day in my book. It means I am one step closer to beating this thing! Oh, and I had an added bonus this week when my CA125 levels went down by over 1,000! (For so many months I had watched them climb up and up, so perhaps this current chemotherapy I'm on is finally having the desired effect.)

Once again, that was great news you passed along to all of us who are battling this particular cancer. Thank you Julie...

Dorothy in the USA

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

What a wonderful result Dorothy! Good on you. Yes it does sound like your current chemo is doing the job for you. Long may it do so!

It is so good to get some good news isn't it! There is plenty around but we don't always think to post it.

Julie

Best Friend
Posts: 222
Joined: May 2011

my moms doc says he has patients with PPC that have been being treated for 10 and 12 yrs. This is encouraging.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

All of these posts have cheered me no end. As you may know I was diagnosed 3 years ago and generally feel up beat. Its been 8 weeks since I had my last chemo and was due a break from it.

However I am due for a CT scan in 2 days. I have gained weight (I have been eating well) but I can't help worrying that the cancer is back growing again. My last CA125 was 225 and I am also fearful that that will be on the rise too.

So it was with renewed hope that I have sat here and read these posts and now I am feeling a little better. Thank-you for giving me a feel of "kin-ship" as I often feel I am alone, fighting this cancer on my own. All of my friends and family are great but I need to talk and listen to you guys who are going through it with me and I feel safe and secure in the knowledge that you understand and can empathise with me.

Take care lots of love xxxxxx Tina

Nflinchum
Posts: 73
Joined: Jun 2012

Tina, I had my last chemo 3 months ago and my scan came back good. I too have gained alot of weight and like you it worries me. I had CA 125 test a couple of weeks ago which was 47.5. When I had my last chemo it was 55. My doctor wants mine to be no more than 35. I have had alot of issues with my port cath since the first of September with inflamation. Had to have it removed. I go for another CA 125 and CT scan the last of November. Worried and scared. Take care.

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

So glad to hear about the great news from your new friend! As apparently many others have initially found, I was dismayed by the news I found on diagnosis that the median survival for PPC patients was alarmingly short. Since my diagnosis in July 2012, I've been happy to see my CA125 count drop from 2,700+ to 149 in late Oct., & I hope even lower in last week's blood tests. (I'll find out in 3 days.) But I have learned, with my oncologist's encouragement, not to obsess too much about the numbers. The side effects from my chemo have been minor--except for hair loss, & I'm even looking to regrowing hair when this round of chemotherapy ends next month.

Thanks for sharing!

BTW -- does anybody out there have experience with hair regrowth after chemo? Can I expect it to be curlier & grayer, as I've often read?

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Good luck for your tests this week!
re Hair growth. I have been trying to upload a new photo of myself - the current one was taken after my first chemo treatment just before it all fell out. I will keep trying but it is on Inspire.com where I am Jules09. I had my last carbo/taxol on May 23 and that pic was taken mid September so about 3-1/2 months growth. However it is now very curly and thick! Very easy to care for I must say which is a bonus at the moment with both hands badly affected by Doxil with burning and blisters! I have heard from others though that not everyone's comes back curly and grey - some have it straight and dark or red! My hair was previously just wavy and colour pretty much unknown as I had coloured it for years! I still get a shock when I see myself in the mirror!
Cheers, Julie

Nflinchum
Posts: 73
Joined: Jun 2012

Seatown I had 9 rounds of chemo and my hair started coming back before I took my 7th chemo treatment which was in June of this year. It is about 2 1/2 inches long now. My hair was very fine, straight and not very thick. I had very little grey. So far it is coming back with some grey and darker than before. So far it is still straight but seems thicker. I have heard it will be thicker and curlier.

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

Thanks for your reply. I have 3 more doses of chemo -- tomorrow, then 2 in the first half of Dec. My taxol/carbo schedule was reduced somewhat in Sept when I began having neuropathy issues with my arms & legs -- something my oncologist said he wouldn't have expected until more time on taxol. Anyway, since my schedule was reduced I noticed I have a few more eyelashes; can't really tell about the hair on my scalp. But I'm looking forward to regrowing hair! Mine was fine & straight too, so I'll be glad if it's thicker. Curls would be nice too. We'll see. :-)

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Seatown I see that you have neuropathy. I have it in my hands and feet pretty bad and drives me insane. It has been 3 months since my last chemo and instead of getting better it has gotten worse. the Dr. tells me it should get better but I am skeptical about it. They told me to take B6 and it should help so far no differ. What are your doctors telling you about it and what to do? I have talked to a few people and they say it can go on for several years and never completely go away. Thanks!

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

Hi--my neuropathy first surfaced in Sept., when I had been on taxol/carboplatin about 2 mos. My doc counseled patience & reduced my chemo schedule from 3 wks on, 1 wk off to 2 wks on, 2 wks off. The severe tingling & numbness throughout my arms, legs, feet & hands I had felt in Sept abated, so I'm very glad it wasn't permanent. But now, on this new schedule, I find I have begun to experience some numbness--no tingling--in my feet only. I'm hoping it won't be permanent, as I understand it can be. Sorry, I can't tell you any more about neuropathy than what my own experience has been.

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

Can't figure out why my stuff is posting twice! :-/

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

This is an error.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

Thank you for posting such a positive story. We all need to hear those. I was diagnosed 2 years ago and had a 9 month remission and have been on chemo since March but I feel good and my CA125 is 14. Dr says to stay on carbo for a while and try to get rid of the beast. I do hope for a chemo break soon and hope for a long remission. Your story confirmed that it is worth all we go thru.
Tina I am praying your tests are good. Be sure to let us know.

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