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I start chemo in three weeks...

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I met my oncologist yesterday exactly on week after my surgery for NSCLC. He informed me my 5cm tumor was actually 7cm and that of the 11 nodes they tested only three were involved. Although the surgeon was successful in removing the entire tumor along with my lower left lung lobe via VATS. I was taken from stage 1b to 3a because of the node involvement. I start chemo in about three weeks,once I have healed enough from my surgery. He says I will have radiation after the chemo. Chemo drug is Cisplatin which is a pretty "hardy" one I hear.

I have been pretty positive up till now, and all of a sudden I am scared all over again... Maybe because while I feel pretty normal now, in a few short weeks it will be obvious to everyone I have CANCER! I guess I have been in some sort of denial. Why should I be worried about losing my hair when I could be losing my life without these treatments??? I feel shallow and selfish. I worry about being sick from the drugs, and all the side effects he told me about.... hearing loss, leukemia, loss of feeling in fingers, etc.

Sorry to be so negative this morning, but I know that someone out there will say something that will get me back on track!
Anita

kv1967
Posts: 6
Joined: May 2010

anita,

im going to start chemo after radiation next week. you are entitled to your feelings but know that god is in control and will not forget you. i have my up and down days too. Right now I feel fine but I know there is a ticking time bomb inside me. I am going to fight as hard as I can to beat it. You will be in my prayers. take care.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Thanks KV1967 you are so right, God IS in control. You just reminded me...I forgot to speak to him this morning! I will mention you, when I do.

hartmann's picture
hartmann
Posts: 26
Joined: May 2010

Hi Anita,

I just wanted to let you know that my sister was dx with stage 3 nsclc last year in june, had 2 lobes of her right lung removed, went through chemo and radiation and has been in remission since October 2009. She never lost her hair and had mostly a lot of nausea and blood changes with her chemo. None of it is any fun but so far she has made it through and has been back to working full time. (she is an RN). Not all the chemo meds make you lose your hair, not sure if cisplaitin does. You can always get a wig like me for the days you want to feel "normal" :). The chemo meds I take have some terrible side effects but so far so good. I have had 6 rounds and have only had minimal side effects considering what I could have. Keep your spirits up, all will work out. My prayers are with you.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

From your picture you are beautiful even in your "hoodie"! Doctor told me this drug will make me lose my hair (even in my ears - so some hearing loss) so I am preparing for that...going wig shopping tomorrow with my daughter so that we can get one to match my hair as closely as possible, then I will have my hairdresser do some creative trimming on it to make it suite my face. If I look good in a scarf I may go that route too! As always your thoughts and comments are encouraging to me.
Hugs, Anita

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

LOL, Mamacita, CSN thinks you're saying something pornographic! I just had the same problem in another thread, talking about having to snip my eyelashes - I originally used the same word you did, took a while to realize what they thought I was saying :)

I lost my hair using Cisplatin and Etoposide; about two weeks into treatment it began to come out when I combed it. Rather than suffer as it came out bit by bit, I whipped out a razor and shaved it all off, a power move! :) It came back in after treatment with a slight wave I'd never had before, it was great! I lost it again with WBR last year, and it never came back in well. I'm pretty sure the Tarceva is at fault, but I consider it a fair trade, my life for my hair :)

I wear hats...well, I wear ONE hat, could never find another one I liked as much, and I just shaved my head again because it was unbearably patchy. Good thing the warm weather is here!

I hope treatment goes really well for you,

Deb

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Hi Anita, sorry to hear that you will need chemo and radiation but I just wanted to help calm some of your fears about the chemo. My oncologist calls cisplatin the "big guns" when it comes to chemo drugs. I had cisplatin 2 days a week in 3 week cycles and I was surprised at how easily my body accepted it. Everyone was surprised, especially my doctors and nurses, that I never lost my hair ;-) I had mild nausea for a few days after each treatment but they have drugs to help you with that. One very important thing to remember is to drink plenty of water each day to help flush the chemo out of your system. I have mild "tingling" in my hands and feet but nothing intolerable and I feel it is a mild side effect to live with considering how much the chemo helped shrink my tumors.

You are not being negative, you are just being human. I doubt anyone of us who has cancer can say that we were never afraid or concerned during our treatments. Please believe me when I say that the treatment is quite doable. If I can do it anyone can ;-) Actually, I think the chemo was easier than the radiation. I have NSCLC in my left lung and SCC of the larynx so I had to have a mask during my radiation treatments to my neck. I had to take an Ativan (sp) before each session just to calm myself down enough that they could put the mask on me and secure the mask to the table. I had Stereotactic Radiosurgery for the tumor in my lung because of the location of my tumor. This type of radiation is much more targeted and does less damage to the good cells.

I can happily say that I am 8 months post treatment and have had 2 CT scans which show that I am still in remission - WooHoo!!! Please relax and try to get yourself back to the positive person you were before the latest news scared you. You will do fine and in a few months you will be on the road to complete recovery.

If you have anymore concerns about the cisplatin or radiation please feel free to ask. We are all here to help you. Just remember that we all react differently to treatment and you may be one of the lucky ones like me who did exceptionally well with one of the strongest chemo drugs used.

My best to you and your family.
Glenna

bfp9548
Posts: 28
Joined: Apr 2010

I had 1B adenocarcinoma and had my left upper lobe and part of the lower lobe removed through the VATS surgery in January. So far I have been blessed with no lymph node involvement. Just had new scans on Friday and everything is still clear. My oncologists suggested 4 chemo treatment just to make sure everything was gone. When I first met with my oncologist he suggested chemo medications that would result in 100% total hair loss(Taxol/Cisplatin). I felt just like you describe when I was told that I would loose my hair. Up to that point I looked normal. No one would know that I had cancer unless I told them. I was devastated. I felt guilty that I was that vain. Then I realized that unfortunately we are judged by how we look on the outside when what is important is what is on the inside. But when it comes down to it, we are survivors. Hair grows back and life goes on. I feel like I grew when I came to these realizations. Just remember, You are a survivor.

choosehope
Posts: 12
Joined: May 2010

I too was 3a but unable to have surgery due to the location of the tumor. I had 2 rounds of chemo, Cisplatin and Etoposide, plus 33 radiation treatments last Nov and Dec. Don't wait for the nausea, I didn't have any!! I ate before the chemo and had snacks every few hours. Don't thinnk about any side effects until you get them. And then you will deal with them. Hang in there, you are not alone.

pkaz53
Posts: 84
Joined: Nov 2005

I did cisplatin and etoposide with combo of radiation then pci wbr, diagnosed with sclc. I have some hearing loss, sensitivity to light and the sun and neuropathy in my fingers (I have a hard time opening zip lock bags and buttoning the top button on my shirts ) I guess its a good trade off I'm still around 6 years later.
I want to wish you the best Anita as you start your treatment, all my hopes and prayers.
Paul

LaurieJA's picture
LaurieJA
Posts: 5
Joined: Nov 2009

Hi Anita - I sent you a long response this morning, but it was amid many interruptions and I'm not sure if it went through. If it did not, please let me know & I'll post again.

And NO, you are not being negative, shallow or selfish!
All the best,
Laurie

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

No...I did not get anything from you that I can find. Thank you for taking the time to write to me. I am looking forward to reading your post. Busy morning here too, I just ordered some leis from Hawaii for my boys' graduation coming up on the 17 of June, and I am ready to go off to Home Depot to get some flowers for the garden! I HAVE CABIN FEVER! By the way if I can look half as good as you do in my scarf, I will wow them at work!

LaurieJA's picture
LaurieJA
Posts: 5
Joined: Nov 2009

OK, I'll try again! Enjoy your garden - it was the best therapy I had during chemo.
I think that my rantings about the fear of side effects, especially hair loss, took up most of my blog time when I was awaiting chemo. But I'm happy to say that almost year past the end of treatment (4 chemo, 26 radiation & a year of herceptin), it was never as bad as I anticipated. I was pretty much able to keep my regular schedule, although at a slower pace. The nausea is nothing like chemo patients went through in the past. You get meds pre-infusion, and have plenty of meds to choose from when you get home. I used the psi-bracelets, which I feel minimized the anti-nausea meds I did take, but everyone is different.

Oh,the hair thing... not everyone loses their hair, but most do, and I think we find that most upsetting because it is a constant reminder of this challenge in our life. And it pulls the rug out from under an important part of our identity. A bad hair day is annoying enough, so to anticipate NO hair... But when it finally happened, it wasn't that bad. My best advice is to be prepared by trying on wigs, hats, wraps, scarves, etc. ahead of time to find what makes you feel most comfortable. I actually developed this whole new style! It would have been much easier to go to a wardrobe stylist than to have to do it by going through chemo. The worst reaction I had was that my scalp was extremely sensitive & broken out, so I couldn't wear wigs. Hence the wraps, which I love.
I also had several terry turbans for around the house or at night if my head got cold; they were always handy & I could throw them in the washing machine.

Other ways to prepare - choose personal care products as natural as possible, and perfume-free. I like Burt's Bees and CeraVe, and heard Aquaphor is good. They are all inexpensive and readily available at CVS, Walgreens, etc. Keep your hands & cuticles moisturized; if you have artificial nails, get them off before you start chemo. Ginger tea was wonderful for anti-nausea. I found out the hard way that mint candies or minty lip balm can burn the heck out of your mouth if your mucosa gets sensitive.

I kept a blog through it all to keep my family & friends updated, and it was such a help. Repeating your story many times over can get tiring. Netflix unlimited subscription was my best friend for the duration!

The first time I went to chemo was a 4-hour event, and I packed like it was a weekend trip. I since found all I needed was a tote bag with some/all of the "essentials:"
A readily accessible valet key
Book + magazine/s (Sometimes it's tiring to concentrate on a book)
MP3 player
portable DVD player & a comedy
notebook & pen
datebook (electronic or not)
phone (you may have to turn it off during the session)
hand lotion
sanitizer or wipes
light snacks that agree with your tummy at any given time
neck pillow
sweater or shawl

There you have it - you are ready to go! Feel free to visit my blog for the details of the saga (laurieslabors.blogspot.com). Remember there are thousands of us here to carry you through; you are NEVER alone!
All the best,
Laurie

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Thank you so much for the good information on what I may need to take with me to my "sessions." You mentioned the scarves you have designed...do you have a website where I might look at them?

You are a sweetheart!

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I see the information on your blog. Thanks!

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