Reoccurrence of UPSC

God be with you on this unwanted journey. 

Five years at stage 1, then a reocurrence?? I don't get it.   Did they use taxol/carbol then and radiation? May I ask what kind of diet did you do for the past 5  years.  Sorry if this is too personal but I am stage 2 and torn to do chemo. Hope to hear from you. Roni

and the enouragement.  I have health issues too.  Yes, they want to do the taxol/carbo 6 rounds every 3 weeks and 3 rounds of radiation.  they claim it will prevent recurrance at 80-90% but I wish I felt as optmistic as you.  I had a full hystrectomy and it sounds like you did not (or did you?). The problem is my lympth nodes are clear and to date the cancer is not there.  I do understand the loose cells can be there and the risk reoccurance.  However, I read and seen videos of people fighting cancer through changing body biology and doctors talking about it.  I am going to call around. I know this is silly but did you try cold caps?  My doctor mentioned it and it seems like a  hassle but  helps with shock value?

I am really sorry this happened to you.  I feel stupid bothering you with my inital treatment. I worry that the doctors don't know enough of this disease.

thanks Roni 

Hi, you keep mentioning these.  I thought I'd just share that someone offered to purchase the service for me.  When I spoke to my gyn/onc about it she wasn't in favor because there is the opinion out there that it may protect some of the free cancer cells just as it is protecting the hair cells.  It would have been a HUGE hassle because you have to have a special freezer and change the thing every 20 min or so.  My husband and I decided that it just wasn't worth it because my treatment took about 4 1/2 hours and I had enough to think about and do without messing around with that.  I got a bunch of really cute pre-tied head wraps and hats and off we went.

I finished chemo Carbo-Taxol 6 rounds on Sept. 21st and I already have not only peach fuzz but actual hair which is getting thicker by the day- it's not long but hey- it's growing every day- they don't call them the fastest growing cells in the body for nothing

Also, you will find that for most of us the first thing that happened was a hysterectomy- mine was radical with everything out and no node involvement.

You may also find it interesting that I also was really set against chemo because I had surgery and nothing had spread outside- I thought I was FREE-but because I have a Naturopath, that I have worked with for years and trust,  who told me as I was trying to decide that the integrated approach has always been more successful in her experience, I decided to do it.  We started a program of supplements and acupuncture to lessen the side effects and keep my healthy body healthy while the chemo took care of those fast growing cells.  We were careful to stop 48 hrs before and wait for 48 hrs after with supplements so it didn't interfere, but I got acupuncture 4 days before and the day after chemo each time.

Prayers that you find the path that is right for you and that you find peace.  Once I had a plan and began walking forward I felt much better.  (((Hugs)))

Hi Roni,

I didn't find out about cold caps till after my first chemo treatment, so I didn't have a chance to try them. Amazon sells them for about $90 or $100 each and they stay cold for about 40 minutes each. You'd need several caps to last through however long the infusion of your chemo drugs last (not the preliminary drugs, though) plus 20 minutes before and after added to that time. You can use a cooler and either dry ice or bags of ice to keep them cold enough during transport and till you use them. It can be a hassle, but worth it if keeping your hair is important enough of an issue to you to also incur the expense of it. I actually had an ice bag on my head a lot during infusions and between to deal with hot flashes and managed to hang on to a thick, if short thatch of hair on the top of my head. My oncologist said he's seen it work hit or miss as far as keeping all of your hair. I've heard of the service where one cap is kept cold all through an infusion, but thought service costs in the neighborhood of $2-3,000.00 for 6 treatments. Yikes!

I used both the hypothermia slippers and mittens during infusions after I developed neuropathy from the first treatment with Carbo/Taxol. If anything was worth the expense, it was those slippers because they also helped me to cope with that pain between treatments and kept it from getting any worse. I'm not sure why it works, but suspect the cold calms down the damaged nerves. I was so exhausted from not being able to sleep from the pain at night until I got those slippers. The mittens I only wore during infusions because my hands weren't as painful for me as my feet were although my sense of touch was really gone.

My husband was always with me for chemo and you really do need help with changing caps or slippers during infusions. Wearing the mittens leaves you pretty helpless for doing anything for yourself, too. I had 4 pairs of slippers and 4 pairs of mittens and at first we used dry ice (a quarter block would last from the afternoon the day before till the day after treatments) to keep them cold in a large cooler and used a 2nd smaller cooler and bags of ice to bring a pair or two inside as we needed to change them. The dry ice almost made the slippers too painful to wear, but I was able to push through that. Towards the end of chemo, we stopped with the dry ice and just used a lot of bags of ice to keep them cold and that still seemed to work and made it easier. At home, between uses, we kept everything in our chest freezer which seemed to make them colder than our refrigerator's freezer did.

In the scheme of things, it really wasn't so terrible to lose most of my hair. I never shaved it, just cut it short when it got really thin and I never really lost it all so I had some protection for my scalp. That made it real easy to throw on a hat or wig, which I only wear when I go out. Hypothermia isn't cheap, so if a person has to prioritize what to get, my vote would be for the slippers. Neuropathy pain can be a lot more intense, unrelenting, and painful than what you get warned about prior to treatment and traditional pain drugs really don't help. I've been really grateful that the slippers helped without having to resort to taking anti-seisure or anti-depressent drugs that might have helped. I didn't like facing the potential side effects those drugs had and the less pills I needed to do take during chemo the better for the issues with heartburn I had.

My oncologist had no issues with me using hypothermia during infusions. Other oncologists may differ. I was desperate enough from the pain I had to take the risk, if there is any. That's a decision you'll need to make for yourself with your caregivers.

Jane,

My heart literally breaks for You. I was stage 3 c when diagnosed and I am 4 years out. I am looking at a recurrence too. I have a lung nodule they were following and then had a Petscan and it showed up hot. Thankfully so far no where else. I am having surgery Dec 1 to remove it and we shall go from there. My youngest son is 23. I will be praying for you.

Tami

TAyers said:

Jane,

Jane,

My heart literally breaks for You. I was stage 3 c when diagnosed and I am 4 years out. I am looking at a recurrence too. I have a lung nodule they were following and then had a Petscan and it showed up hot. Thankfully so far no where else. I am having surgery Dec 1 to remove it and we shall go from there. My youngest son is 23. I will be praying for you.

Tami

Tami, I wondered how you have been doing.  Please let us know how you everything goes. Prayers for you, as well as all the women on these boards.

Lou Ann M said:

cold caps and cold feet

i think,that Red Corvette's wife used the cold caps with success.  I asked my Onc about them recently, not because I was interested in them for me, Losing my hair was the least of my worries and I kind of found it fun to buy a new hat every once in a while.  I saw something on CBS about them and asked what he,thought.  He said that they were a little bit of a pain because they had to be changed often and that the,infusion had to be given over a much longer time to be effective, past the normal.hours that the cancer Center was open.  As far as ice booties and mittens, my cancer center provided them to,use during infusions and I used the booties.  My first 6 infusions were at a different place and they did not use them.  I had neuropathy when I,started here and it has not gotten any worse thanks,to,the.booties..  it was hard enough for me to,keep the,ice on my feet for four hours can't imagine how having it on my whole head for that long would feel.

Hugs and prayer, Lou Ann

My wife had good success with Penguin Cold Caps and never went bald. She did loose hair but she had a lot to start with. We also kept Mrs. Red's hands and feet in ice water during the infusions and she came through chemo with no neuropathy at all. It's tough and unpleasant being in ice for 4 hrs. Not pleasant but just a question of how much do you want to do to keep some hair and ward off neuropathy. For us the cold caps were a lot of work but it kept us busy and the infusion time flew by. It's not for everybody but we had a good experience and great results. Good luck!! Let me know if you need more specific info.

Red

Red Corvette said:

Cold Caps

My wife had good success with Penguin Cold Caps and never went bald. She did loose hair but she had a lot to start with. We also kept Mrs. Red's hands and feet in ice water during the infusions and she came through chemo with no neuropathy at all. It's tough and unpleasant being in ice for 4 hrs. Not pleasant but just a question of how much do you want to do to keep some hair and ward off neuropathy. For us the cold caps were a lot of work but it kept us busy and the infusion time flew by. It's not for everybody but we had a good experience and great results. Good luck!! Let me know if you need more specific info.

Red

HI! I start my first chemo treatment on 12/21. I too will be using the Penguin Cold Caps. They told me keep using the caps for 4 hours after my treatments. Keeping my as much hair is important to me, that seems like a long time tho.Is that how long your wife kept them on after treatments? PLease, any advice would be appericated.