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So so angry!!!

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

Well my remission has lasted only 2 months!!!! How can this happen. Six months carbo/taxol and 2 surgeries and today my CA125 has jumped from 21 to 209. I am devastated - expected to get at least a year before I had to face this again. My oncologist putting me on Caelyx starting this week. Does anyone have experience of such a short remission and can it come back from here to a longer remission? I was diagnosed exactly 10 months ago to the day with Stage 4 PPC. I am told few side effects from Caelyx - any experiences would be welcomed please.
First grandchild due in 8 weeks - how do I tell my daughter??? Sorry to unload but in a bad bad place. I have always been so positive but this is a real kick in the g....s!!

JulieL

stella65
Posts: 151
Joined: Feb 2011

Well that is what I said when I read your post, I am so sorry you are finding yourself in a bad place, I have no guidence or medical help but I send you my love, you always seem to be so upbeat and your pic is lovely, keep fighting on Julie, it seems to me everyone has different reactions and symptoms to the cancer itself and the treatments, your next chemo could give you a good remission, you have to think that.
Much love, SueX

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

HI: I'm so sorry, Julie, but remember that a rise in CEA may not mean your cancer is back! It can be for other reasons. Wait until you get a scan and see your oncologist. My oncologist is not a big believer in the reliability of cancer markers. I'll be thinking of you.
Cheryl

PatsieD
Posts: 100
Joined: Jun 2012

I agree about the CA125 marker as being unreliable. It's a good idea to wait until the results of the scan. Lots of healing hugs are sent your way.

Tasgirl's picture
Tasgirl
Posts: 85
Joined: Jun 2010

Hi Julie
My number has also risen to over 200 (but I know I have a couple of lymph nodes and a fluid filled cyst) BUT i have found out that an elevated IL8 could increase your numbers. What that means I am not sure yet but just to let you know that an increase in your numbers does not necessarily mean IT has come back.
Jenny

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

Thank you girls so so much! You have helped to lift me up out of a dark place and I am now feeling better about facing this. Caelyx is called Doxil in the USA I believe. Any reports of side effects or miracle results please! I have now told my daughter and she is as supportive as ever, as is my husband for which I am very thankful and grateful. Thank you all for your care, support and love. It is such a huge, huge help! My chemo has been delayed until next Tuesday (Sept 18th) due to short supply but not too long to wait. The portacath goes in tomorrow which should make the whole experience simpler.
Thank you all again. I really do appreciate you taking the time to send a message.

Love,
JulieL.

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Julie,
I have just got a clean CT scan after being diagnoised in December 2011 with PPC stage 4. I had a major 51/2 hour surgery which they got all but 90%. I have had 9 cycles of taxol and carboplatins. I just went to my doctor last week and he gave me the options of 3 more rounds of chemo, observation or take Tamoxifen 20 mg orally for maintenance with CT scans on a regular basis plus the CA 125 test. I am so happy about my remission but have the fear also how soon will it come back. Has anyone you know ever taken the drug Tamoxifen? If so, what were the side effects? Hang in there Julie I feel for you and you are in my prayers.

Nflinchum
Posts: 73
Joined: Jun 2012

I see I made a major typo I meant they got all but 10%. They removed 90%.

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

So glad to hear you have a clean scan following your treatments! Looks like we started this PPC journey at much the same time! Sorry I dont have experience of Tamoxifen. Maybe look on Ovarian Cancer board as well - might be someone there who can give you personal reports of it. Relieved to hear that was a typo! You, too, are in my thoughts and prayers.
JulieL x

tdpinokc
Posts: 9
Joined: Aug 2012

I was on tamoxifen for 3 years after breast cancer in 2001. It added a few pounds and made me a bit achy, but it didn't keep me from living a full life including working, playing tennis and going to the gym. Take care and good luck. I'm taking gemzar right now for peritoneal cancer for recurrence of breast cancer in the peritoneal layer. I have had 3 rounds of gemzar and feel quite better. Take care.
chris

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

I have just finished my sixth treatment with Doxil (Caelyx as it's known in the UK). Unfortunately, it did not have the desired effect my oncologist had hoped for, even though the side effects were very minimal. My CA125 level is now 12,000!

I was diagnosed with PPC Stage 4 in February, 2011, and since then I've had 7 rounds of Taxotere/Carboplatin, followed by surgery in August of last year. Since my CA levels were still elevated I was put on Gemzar, but only had three rounds of treatment as both my white and red blood counts dipped dangerously low. My oncologist then put me on Avastin in conjunction with a daily oral chemo but, once again, the results were disappointing. Earlier this year I started on Doxil, and although this particular chemotherapy had the least side effects, it was doing nothing to bring down my cancer levels. So, beginning next month I will start on yet another course of chemotherapy, this time Topotecan, once a week for 3 weeks with one week off. I'm hoping that this treatment may just have the magic formula to kick my cancer! I have resigned myself to the fact that I will never be in complete remission, but if my cancer can be managed so that I can continue on with life I'll settle for that! I know that no two cancer patients are alike. Each of us have different reactions/responses to our various treatments, but coming here to read some of the heartwarming posts makes me feel so much more hopeful.

Good luck with your new round of treatment!

Love,
Dorothy

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

Thank you for your post - this PPC does seem a very tough nut to crack and we all have a different track! Do hope the Topotecan will do it for you Dorothy. Glad that you too are getting some good results on your latest chemo Tina. Yes I am now too slowly coming to the realisation that it is here as an ongoing situation and will require constant treatment. My initial hopes of cure have pretty much been dashed. However still hopeful for remissions!!! In the two weeks between my blood test and first Caelyx treatment this week I went from CA125 of 209 to 360 so at least know the number on the day of treatment and therefore if there will be a reduction!

Yes having a new baby in the family is a joy and can't wait for our little one to arrive!

So far so good with the Caelyx - very little nausea and I am feeling strong!

Thank you so much for your support - my spirits have been lifted hugely!

Love,

Julie L xx

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

Hi Julie
Sorry to hear you have only had 2 months "chemo free". You and I are very similar and I only had 5 months after my first chemo. As you know I am stage 4 too.

I was diagnosed Nov 2009 (nearly 3 years) and I my chemo and breaks don't seem to change much. I look at my cancer as something that I have to control with chemo. I have never considered that I will ever be in remission and therefore I am never diasppointed. (I set myself low expectations and that helps me to cope with any tiny bit of good news I do get)

During the 3 years since my diagnosis I have actually lost count of the number of "chemos" I have had (this is actually true) This year I have had 3 chemos back to back because the first one didn't work, I had a reaction to the second and I am currently just about to finish the third.

What I am trying to say is, I have found a way of living with the chemo. Don't get me wrong - this current one is evil and it knocks me to my feet for a week after it. BUT as soon as I pick up I feel so much better and I am able to put the bad stuff to the back of my mind. It has taken me almost 3 years to get to this but it works for me and I have a really good life.

By the way, I have a 12 month old grandson who has given me a whole new reason to kepp up the fight.

We are only human and having bad days are normal, but when you get a good day they are great.

Regarding Cealyx - that is the chemo that didn't work for me. Sorry, but we are all different. There are loads of chemos (I should know I think I have been on 7 of them) and there are still more. My onc said it is a case of finding one that works for you.

Good luck and I hope Caelyx works for you. Love Tina xxxxxxx

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Isn't that the drug that breast cancer survivors need to take for 5 years following surgery/chemo/radiation? If it is, I didn't hear anyone complain about nasty side effects but I may be thinking of the wrong drug.
Cheryl

PatsieD
Posts: 100
Joined: Jun 2012

I was on Tamoxifen years ago in a bid to become pregnant. I didn't have any side effects that I can remember and just lived a normal life (albeit with the heartache of the underlying infertility).

Best Friend
Posts: 222
Joined: May 2011

Well none of this cheered me up. If this doxil is so uneffective why bother even taking this step. I wonder if it has worked for everyone. I wish my mom could go back on carbo/taxol. She was saying something about desensitization. Which is like making it so u are able to do a chemo u are allergic too. I mean she had 9 months remission. This stinks. Are these other chemos supposed to lower ur numbers or keep them the same. I am also wondering why my mom wasn't given a catscan. He said it wouldn't be very beneficial. Oh well. I need to research this doxil more!

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

Julie I am so sorry you only got 2 months remission. I am stage 3c and had a 9 month remission. I know it is more devastating than the original diagnosis. I too went on Doxil. As I understood it, Doxil was easier to tolerate and yet keep the cancer at bay if not kill it.I was told of a lady who had tried many different chemos over many years and then tried Doxil and had been on it for 5 years and was doing well. She was traveling and working. They told me of another lady that had been on it for 5 years and then had a 12 year remission. Of course these are probably not the usual cases but they give us hope. Well I tried it and at first my numbers went down but by my 5th treatment I started developing symptoms again and the beast was back.
I started back on carboplatin and am now feeling better. I have been told I will be on this quite awhile
Best Friend I too am allergic to carbo. I take it in the hospital diluted and given over 19 hours. I dont seem to get so sick with it either. They have told me that they can almost always give it this way even if you are allergic. Look into it.
As for side effects of doxil, I did get very tired. There are a lot of little rules you have to follow for a few days around the time you get the drug like not touching anything hot etc. I did get some peeling of my feet but that was about the worse it did and I did feel pretty good.If you have any specific questions about the doxil please dont hesitate to ask me.
Wishing you the best!
Linda

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

It is now a week and a half since the first dose and I must say as yet side effects have certainly been minimal - but I have noticed the tiredness. Unfortunately though I had another CA125 earlier this week and had another jump in the numbers so I have to say my confidence in the Doxil/Caelyx is waning somewhat! My Oncologist tells me not to despair as yet and will do another test the morning of my next treatment and will decide on that result where to go next. He tells me there are lots of other options! We all just have to find the right one for us don't we. In comparison when I started on the carbo/taxol regime my numbers dropped dramatically with each treatment.

Glad to hear that the carboplatin has you feeling better and long may it continue!

Yes it is cheering to hear these stories of long remissions and "maybe-cures" - I just hope they are factual and not urban myths!

I wish you well too - good health and good cheer!

JulieL

Dianna9
Posts: 11
Joined: Feb 2012

I feel for you Julie.
I was in remission for maybe 3 months and now I went from ca125 15 in june to 38a month ago and to 98 just had a pet scan Dr.apt. Tuesday.
i would just tell her but if you are afraid she will be in danger with the baby wait, it won't make the outcome any different if you wait.
It is hard, I did try to tell my son that it might re occur now he believes me (I think)
He is 23 to get married next June.
I have been looking into more of my supplements, and Herbs they have helped so far no side effects or nausea during my 6 months on chemo.
i was diagnosed in Jan.2012 ppc stage 3
Good Luck
Dianna

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

It is so helpful to be in touch with others who understand what we are going through.
Next Wednesday I see my Oncologist to get latest blood results from which the decision will be made as to where we go chemo wise. I have chemo booked for that morning also. The waiting is difficult but I am keeping busy and trying not to think about it too much! Hardest at night when sleep is elusive.
I too am looking at other natural options to have alongside medical treatments and am sure that these too can help us. My last CA125 was 459 so fingers crossed the Doxil/Caelyx will have reduced this - my last test (3 weeks ago) went up by 100 in a week.
However I am feeling great and enjoying every day to the max!

Cheers,
Julie

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