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Posted

I'm having such a bad day today just thinking about chemo. It has been almost 5 weeks since I had the lower lobe of my right lung removed and today I saw my oncologist and he is ready to start my first of two rounds of Paclitaxol/Carboplatinum any day. Although I have previously gone through 6 cycles, it was a lower dose. Now I'm really scared to go through this although I know I have to. For the first time today I got emotional at the doctors office and couldn't even speak. Why? All because my hair will fall out this time. It didn't the first time but I probably won't be as lucky. I should be thrilled that I'm cancer free for the moment but instead I'm so frightened of more chemo and my hair.

I think it's the compounding stress of dealing with this disease since May of 2006 and trying so hard to keep working and taking care of the kids and pretending that everything will be okay and then the reality of surgery and the pain and discomfort it causes has made it difficult to remain positive.

I also don't know what to do about the chemo timing. According to the clinical trial, I have to have the chemo no later than 10 weeks after surgery, (that would be about Dec. 11th). I thought December 1st would be good. My medical oncologist wants to start in November. Should I just move forward and get this over with but I don't feel well recovered from surgery and won't I need to be strong for chemo? Decisions, Decisions?????

Lilly

Posted

Hi Lilly,

I had my upper right lobe removed on January 5, 2005. I received the SAME chemo you will - 2 doses and was FINISHED by the end of February. It was 1 tx 2 times - 3 weeks apart. You can kinda figure how long after surgery my first round was.

I, too, had the same low dose beforehand. The adjuvant was a bit harsher, but not much. I experienced some achy joints. It seemed to be more bothersome a few days after the tx. It was not so bad at all. I had lost a lot of my hair previous to this. I had LOTS of thick hair. I just put that behind me and got a couple pretty cute wigs and went on. Some of my friends felt I was vain because of the wigs. I just wanted to feel as 'normal' as I could and look just like everybody else. Actually my avatar pic is a wig and I grew to LOVE it. Now my hair is all back and a PAIN to take care of. Some days I miss my wig. But it is a different story when it is something you NEED to do as opposed to something just for the FUN of it.

So Lilly, the very worst is over. Really it is. My mind still likes to play havoc with me, but it has been going on 26 months since dx. It will be for you too......just wait and see. Good luck.

Kasey

Posted

Me too Lilly,

I had chemo for six weeks before surgery. It was a lower dose because I was also having daily radiation. I had chemo (carbo/taxol) twice after surgery. I would go with the oncologist and have the chemo on the schedule that he suggests. I notice the time period for most people is about the same. The chemo after surgery is stronger and I did lose my hair, which was not easy. My hair has all grown back now. My chemo was three weeks apart. On about the third day you do get the joint aches and pain. By the time that I had my second and last round of chemo I learned to take my pain medication BEFORE the pain kicked in and it truly did help. My surgery was July 1st, 2005. I was back at work teaching high school at the end of August. I was so happy to have my job to go back to and my students. who left me little time to think about cancer. I had a ct scan last week and a mammogram last month, bot tested clear for cancer. I hope this helps. I will contiue to keep you in prayer.

Carol

Posted

I will be praying for you, hang in there!! I am just behind you on things, probably looking at surgery soon, so I know your tired and scared and ready for this to all be over. Remember... everyday in everyway, I am getting better and better. I try to say this when I get scared and feel like I am losing my mind. Lots of love,

Betty

Posted

Lilly,

I didn't do traditional chemo either before or after surgery. At the time of my surgery, my oncologist said that it didn't improve the odds - something that has been proven false since that time. The trial I was involved in included Iressa and I was one of a portion of guinea pigs to have hair loss. I did not lose all of my hair, just 70% on the crown of my head. I found that I employed some of my dad's old tactics with a curly comb-over (my dad's been bald for many years and now just wears it all clipped around the sides).

I do know what you are saying about not wanting to lose your hair - currently, it's up to YOU to let people know what is going on with your life, but a bald head pretty much screams something is up. One thing to your advantage is that we are heading into winter and when you are out in the public eye, you can actually wear a soft stocking cap and it all looks "normal".

All in all, it is "just hair" - get your mind around it, accept the fact it's going to fall out, and go wig shopping now so you can mimic your natural look so even those close to you won't know. OR, step out on the wild side and get a temporary tattoo or markers and write out "you think YOU'RE having a bad hair day?" where it can be read by anyone looking. It's all in the attitude, and this too, shall pass.

Adjust your attitude, add some humor, and get on with it. It's something you know you need to do, try to have a bit of fun with it. It's a stage, like puberty - awkward, to say the least. I remember one lady from here that painted her bald head to resemble a pumpkin for halloween...when on oxygen, she decorated her tank to look like a little robot...

It's an attitude. Take control of that part, embrace your difference and exploit it - make it look intentional. Christmas is coming, try for a tree ornament...

Good luck to you!

Becky

Posted

Hi Lily; I suppose with all the previous stuff you have gone through, starting another chemo again is kind of like a tipping point for you emotionally. Just ackowledge that and jump in the chemo chair is my advice. And do it with faith. A leap of faith into the chemo chair.

Don M

Posted

Lilly,

If you ever want to talk or need a shoulder to cry on or scream on, just PM me your phone number and I'll GLADLY give you a call my friend.(((LILLY))) Having someone to TALK to sometimes really is better medicine then just sitting here typing.

Your in my prayers each and every day. Just keep saying to yourself, "I can DO THIS, I can DO THIS" Turn this negative into a positive. YOU CAN DO IT! :wink::wink:

When I lost my hair I cried for about 15 to 20 minutes, and then that shock was over. It's very short lived and a small price to pay to be here. I know you know that, but sometimes we need to hear it.

Your going to do okay, and your going to BEAT THIS CRAP!

Posted

Just my 2 cents, but if you have to do the chemo anyway, the sooner you get going, the sooner you get done. That's the way I felt when I had to go, and it helped me a lot to count down the days till I was done.

The hair thing, I'm really with you on that. I didn't lose my hair, but my sister did with her breast cancer treatment. She did order a really inexpensive wig over the internet though, and you couldn't tell the difference. She had some tears when it fell out, but now, about 8 months out of chemo treatment, it's growing back in really quickly, and she feels good and looks good.

Cindy

Posted

I can't express in words how I feel about all of you. You are all so awesome and comforting.

It has been a crazy weekend. I had nine 13 year old girls sleep over for my daughters birthday on friday night and I had to sleep in the recliner chair in the family room all night to make sure they didn't do anything stupid. But they all went home saturday afternoon thankfully and my daughter had a good birthday.

Anyhow, as I read each post it helped me come to the conclusion that I have been a baby about surgery recovery and I should just do chemo ASAP and be done with it. If my hair is going to fall out, the sooner it does the sooner it will grow back. Then I also thought I was supposed to go back to work on November 13th. If I can start chemo before then, I will just continue my disability until chemo is over (I think I have enough weeks at full pay left to do that)

Tomorrow I am calling my Oncologist to tell him I want to start immediately. Thank you everyone for giving me the courage to get through this.

Love Lilly

Posted

Dear Lilly, is the best thing that you ccan do. Get it over. I was really scarred about chemo & just pass my firstcycle without a problem. They told me that I will losse my hair, not yet....but think it will grow again.

Best of luck

bucky

Posted

Hi Lilly, I noticed some ladies are able to keep a fringe of longer hair here-and-there along bottom of scalp. When they wear a hat, a few strands of hair hang out and it fools everyone.

Wishing you all the luck and strength to get through this next and last phase. :)

Barb

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