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I'm heartbroken I'm heartbroken

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Unread 06-22-2004, 09:58 PM
I'm heartbroken

I think the others have mentioned any thoughts I've had. Though my therapy is gardening, which is about faith and beauty and the natural order.

But I did want to say that I have just read about an alternative chemo combination that is not supposed to have the painful hands and feet.

I read about it at the Doctor's Guide. It was a paper presented at the American Society for Clinical Oncology meeting.

The headline is Relapsed Ovarian Cancers Respond to Pegylated Liposomal Doxorubin/Carboplatin Regimen

"A less toxic regimen for treating relapsed ovarian cancer appears to have equivalent outcomes to standard treatment of paclitaxel and carboplatin, say researchers."

The French researchers said that this combination was able to markedly reduce 2 major complaints of treatment: neurotoxicity that limits fine motor functions and alopecia.

Dr. Ferrero said the incidence of alopecia in the 105 patients with the alternative treatment was 12%. The incidence of neurotoxicity of grade 2 or more was 7%.

When they compared the outcomes with this combination with the standard chemo that the incidence of alopecia was 86%; the incidence of grade 2 or higher neurotoxicity was 20%.

The overall response to treatment was statistically the same and the overall survival was better.

It sounds as though you'd have to join the larger clinical trial though. The combination is still deemed experimental.

The researcher invited interested clinicians to contact him for patient inclusion at: [email protected]

I hope this helps. And most of all I hope the CT scan shows no need. My prayers are with you.

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Unread 06-22-2004, 11:17 PM
I'm heartbroken

Dear Cyndy:

I too am so sorry to hear of your news. Please know you are in my thoughts and as the other gals have said - wait to see how the CT scan results are and truly go from there. No doubt you will get much advice from your doctors once they know more. My very best thoughts are with you.

Unread 06-23-2004, 01:43 AM
I'm heartbroken

Dear Cyndy,

I was so sad to read your note. But Margaret321's recent post indicated that despite a soaring CA125, her CT scan showed only a small lesion. I am hoping that your rising numbers are a sign of something more benign than what is suspected.

I am so sorry for your sorrow, and for what you must be going through. I'm sure the Doxil was rough, and I'm sorry to hear that your feet were in so much pain for such a long time. I hope, as Karenann suggested, that Carboplatin and Taxol might be able to be used again. Or that you can get tumor sensitivity testing so you know what won't work.

I think talking to a counselor and a pastor is a good idea. I hope that they can offer you some comfort, or at least a chance to vent. Please let us know how your CT scan goes and what your doctor thinks is your next line of treatment.

I wish there was something I could say that would help. I am sending you love and hugs from afar. s!
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Unread 06-23-2004, 04:51 AM
I'm heartbroken

Hi Cyndy

I know where you are coming from. Sadly, people don't know what to say, especially when they don't have or have never experienced our illness. I have been battling cancer for a bit over a year. It came back in January. Amazingly, I did not lose my hair and actually ended up gaining weight (have since lost a bit of it) when I had treatment last year. I have only recently begun losing my hair.

Since I don't look sick, people feel that I"m not. I guess in a way this is good. Still, I look down and see a stoma, can't walk like I used too, and can't work. I sometimes have nightmares, that I"m yelling out to strangers, 'hey, can't you see I'm sick?'. I guess it's because when I first became ill people acted like it was something I would get over rather quickly, take a pill, get over it. My form of cancer was rare until it spread to my colon.

But don't give up. We can be survivors. I have an aunt, she is 84. She has been a leukemia survivor for 5 years. When I first found out that she had leukemia I wrote and called her, hoping to be a support to her. Instead, because she is such a positive person, she gives me support all the time. She is such a great lady with a great positive attitude.

I wish you all the best and am so sorry for what you are going through right now. Hang in there hun.
Unread 06-23-2004, 07:49 AM
I'm heartbroken


Huge s

As Ellen said lets wait for the CT scan and see what it says. I do wish you the best and will pray for you.

God Bless
Unread 06-23-2004, 09:17 AM
I'm heartbroken

Hi Cindy, I am sending big s your way and hoping your CT scan will bring good results. You already have recieved lots of good advice re what others try to do to feel better. I also looked at your signature line and noticed you included
Give all your worries to Him, because He cares for you.
1 Peter 5:7
It is often hardest to believe the above words are true when we need them most but when things become difficult I have always found that when I finally turned to Him in prayer, I felt better. I often begin "talking" to Him by saying the "Lord's Prayer" and then go on from there. He will bring you comfort and take your worries if you let Him. Remember He ultimately is in control and always is there for us if we allow Him to be.
Besides talking to my Maker, I find that my furry kids (His little creatures) can help cheer me up and focus on the present. I also admit to boning up on possible treatment plans, including possible alternative ones, and I like to plan things, or at least think I am planning things, with my doctors.
I will keep you in thought and prayer. Blessings, peggiesue
Unread 06-23-2004, 09:22 AM
Alternative therapies...

Have you ever considered alternative treatments such as Mgn-3, shark cartilage and oxygen therapy? Those are always an option as a suppliment to traditional therapies. Maybe your doctor can give you a lighter dose of chemo. I just came out of six months of cisplatin, the highest dose, and understand exactly where you're coming from with the neuropathy and the chemo altogether. Everyone here is praying for you, as am I.

(RAH, radiation/chemo, neuroendocrine cervical cancer stage 1A1)
Unread 06-23-2004, 10:40 AM
I'm heartbroken

HI, Cyndy,
I'm sorry to hear of your news. IN my mind, sometimes there's just nothing like a good old fashioned pity party for one's self. Get itall out of your system and then you can move on to other things. Waiting is difficult. Is there some project you can start that will keep you busy? Painting? Needlework? Sewing?

My thoughts and prayers are with you!

Unread 06-23-2004, 03:55 PM
I'm heartbroken

Hi Cyndy:

Just at 9 weeks after surgery for uterine cancer. For me, when I get sad or was waiting for pathology reports, etc., I made myself talk a slow walk to a nice place, or flip through a travel magazine with beautiful pictures (of Italy or Switzerland), or put on my headphones and listen to some great music. So much better for me than watching tv. And praying helps, for me.

I'll keep you in prayer. This is the first time I've responded to a post.


Joy Marie

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