More Chemo

markatger
markatger Member Posts: 314
edited March 2014 in Colorectal Cancer #1
Hello hello,

Well here I am two weeks after my liver surgery...doing pretty darn good - off painkillers and pretty much able to do most activities (Amazing to me!!).

As of now it appears that what they took out of my liver was not cancer - Woohoo! The original plan was for me to have more chemo after I recoverd from this surgery. But now that it turns out that I didn't have liver metastasis, my oncologist says I may not need more chemo.

Here is what I have had so far :

4 Rounds FOLFOX + Avastin - April/May 2005
6 weeks 5 FU & Radiation - June/July 2005
Rectal Surgery - Sept 2005
5 rounds FOLFOX (no Avastin) - Nov/Dec 2005
Liver Surgery - January 2006

So I have had 9 total rounds of FOLFOX. I'm wondering how many roundsdid other people who had stage 3 cancer have?

I, of course, will listen to my oncologists recommendations. But I want to be prepared in case he possibly takes my preferences into account.

I am leaning towards pushing for more chemo. But I did have some weird stuff show up on my lungs during last scans that I am worried about is lung damage from chemo. Ack.....dunno dunno..

I have some other things on my mind too....deciding whether to go on HRT from early radiation-induced menopause (age 34). And also what the heck they took out of my liver if it wasn't cancer. Wondering if I need to see a liver specialist. They believe my liver tumors were benign adenoma which is most often found in young females who have usesd birth control. Well if they want to put me on HRT - won't the estrogen cause me to grow more of these adenomas??

Ackk...anywho long post....lot on my mind....but I am trying to count my blessings - with the successful and relatively easy surgery and great liver results.

Maria

Comments

  • amysangel
    amysangel Member Posts: 9
    #2
    Wow.........it really is a miracle the more stories i hear on this web site. I would have to say it wouldn't hurt going to a liver specialist or getting second advice. I am so amazed as to the strength i feel from every one, good luck.
    amysangel
  • alihamilton
    alihamilton Member Posts: 347 Member
    #3
    Hi Maria, did they do a pet scan before they operated on your liver? It really concerns me that you had unnecessary surgery. My husband had some suspicious lesions on his liver two years ago but the pet scan showed they were nothing serious, so no treatment was given.

    I would certainly think carefully before having any more treatment....just do not rush into it.

    Is there a reason you want to go on HRT? That can create its own problems but there may be a good reason for you to start it...again, I would not rush into that.

    I am glad you are feeling OK. Take care of yourself.

    Ali
  • suezav
    suezav Member Posts: 42
    #4
    Hi Maria,
    So glad you had good news about your liver! My daughter, age 23, dx stage 3 rectal last april. She had 6 folfox with avastin (originally they thought she was stage 4). Her surgery was november 4th. Then she had 6 weeks of radiation with 5fu. Pretty soon she will have 8 more folfox without avastin. We are hoping that her radiation didn't put her into early menopause. Lots of good luck to you. susan
  • Kanort
    Kanort Member Posts: 1,272 Member
    #5
    Dear Maria,

    I can't even imagine the thrill you felt learning that your liver lesions were not cancer. Fabulous news!!! But bless your heart for having to endure an unnecessary surgery. My stage 3 treatment consisted of 12 treatments of Folfox. I completed them in July of 04 and have been doing great. You have been through so much, but I can understand you wanting to complete the entire protocol.

    Congratulations on your good news and I hope you continue to heal well.

    Hugs,

    Kay
  • taraHK
    taraHK Member Posts: 1,952 Member
    #6
    Hi Maria,
    As I said before, so thrilled that those liver tumours were not mets. It does sound like it would be worthwhile learning more about what they were and what the implications are.
    For what it is worth, I was scheduled for 12 rounds of FOLFOX, and completed 11.

    Also, I did decide to go on HRT (for a while), after going into instant menopause after radiation. I'd be happy to talk with you about my decision and thoughts on that. Mind you, I didn't have the added complication of the birth control/adenomas....
    Good luck to you.
    Tara
  • KFalvey
    KFalvey Member Posts: 118 Member
    #7
    Hi Maria,
    I was stage 3 and finished 12 rounds of Folfox,1 without Oxaliplatin(it was causing too many problems;Neuropathy,Respiratory mostly.
    Colon cancer is not effected by hormones according to my surgeon. I have cysts on my ovaries and fibroids on my uterus and wanted him to do a hysterectomy at the same time as my colon surgery, but he said the chemo would start immediate menopause and the cyst and fibroids should dry up on their own from that . The only problem with HRT is the chance of other cancers of the female organs forming from the hormones.
    I'm now having fun with the hot flashes but sure don't miss the periods. About the liver spots, I have several of those also; the doctors said from the cat scans that they were cyst filled with fluid and nothing to worry about. During surgery, he did do a biopsy of one that looked suspicious. Luckily is was nothing, so don't worry too much about it. My surgeon said it shouldn't cause any problem unless they get so big that they press on other organs. They will watch them in the following years. I'm glad you are recovering quickly and hope your good health continues. Kandy
  • markatger
    markatger Member Posts: 314
    #8
    alihamilton said:

    Hi Maria, did they do a pet scan before they operated on your liver? It really concerns me that you had unnecessary surgery. My husband had some suspicious lesions on his liver two years ago but the pet scan showed they were nothing serious, so no treatment was given.

    I would certainly think carefully before having any more treatment....just do not rush into it.

    Is there a reason you want to go on HRT? That can create its own problems but there may be a good reason for you to start it...again, I would not rush into that.

    I am glad you are feeling OK. Take care of yourself.

    Ali

    Hi Ali,

    Yes, that is great overall advice. Not rush into anything. There is no rush to get on estrogen. I am actually using a cream right now that I'm a little uneasy about.

    I did have several PET Scans. It seems that the adenoma looks like cancer on the scan. aAnother strange thing is that it shrank with chemo. I don't completely get it at all.

    Also I guess I would have had to have the benign adenomas taken out of my liver. They can turn to cancer or also hemorrage. But yeah it was crazy that was my first question in the recovery room after the surgeon told me - I was like so I didn't need this surgery!!! That would have been really frustrating.

    Maria
  • markatger
    markatger Member Posts: 314
    #9
    taraHK said:

    Hi Maria,
    As I said before, so thrilled that those liver tumours were not mets. It does sound like it would be worthwhile learning more about what they were and what the implications are.
    For what it is worth, I was scheduled for 12 rounds of FOLFOX, and completed 11.

    Also, I did decide to go on HRT (for a while), after going into instant menopause after radiation. I'd be happy to talk with you about my decision and thoughts on that. Mind you, I didn't have the added complication of the birth control/adenomas....
    Good luck to you.
    Tara

    Thanks Tara!!...I might contact you about the HRT issue.
  • markatger
    markatger Member Posts: 314
    #10
    suezav said:

    Hi Maria,
    So glad you had good news about your liver! My daughter, age 23, dx stage 3 rectal last april. She had 6 folfox with avastin (originally they thought she was stage 4). Her surgery was november 4th. Then she had 6 weeks of radiation with 5fu. Pretty soon she will have 8 more folfox without avastin. We are hoping that her radiation didn't put her into early menopause. Lots of good luck to you. susan

    Susan,

    So glad your daughter also turned out not to have metastasis. It is a wonderful feeling to be downgraded from Stage 3 to Stage IV.

    Best Wishes to both of you,
    Maria
  • markatger
    markatger Member Posts: 314
    #11
    Kanort said:

    Dear Maria,

    I can't even imagine the thrill you felt learning that your liver lesions were not cancer. Fabulous news!!! But bless your heart for having to endure an unnecessary surgery. My stage 3 treatment consisted of 12 treatments of Folfox. I completed them in July of 04 and have been doing great. You have been through so much, but I can understand you wanting to complete the entire protocol.

    Congratulations on your good news and I hope you continue to heal well.

    Hugs,

    Kay

    Thanks Kay for the info about how many treatments you had. And for the support : )
    Maria
  • spongebob
    spongebob Member Posts: 2,565 Member
    #12
    Maria -

    Woo-Hoo is right - so glad to hear the liver issue was a nothing burger. Continue to get strong and well again.

    Cheers!

    - SpongeBob
  • jana11
    jana11 Member Posts: 705
    #13
    Maria, YAHOOOOO!!! Holy cow is that wonderful news. I am sooo happy for you.

    I started my early menopause at age 32 with radiation and chemo. I was later put on HRT (hormones). We are actually the perfect people for truly replacement therapy. But me, queen of crazy medical problems, ended up with a clotting mutation and had a clot in my brain - so no more hormones for me. But I was on them.

    Wait until after ALL your cancer and chemo treatments are behind you before you worry about the hormones. Both cancer and chemo increase your chances of clotting, as does hormones. So, just deal with all the hot flashes and blame any mood swings on your menopause! :)

    I hope all your news is as good as the non-mets! Celebrate and enjoy your cancer free life! jana
  • CAMaura
    CAMaura Member Posts: 719 Member
    #14
    Hey Maria -
    Very happy for you. My docs are using ultrasounds to clarify my liver lesions...two of four are cycts; we'll continue to work on the other two. It might help you as well! Hope you can enjoy the process of healing and gaining strength. All the best to you! - Maura
    Oh, I made it through nine of 12 sessions of FOLFOX6. That was it for me - and except for nights like tonight (dinner out) I adhere to a pretty strong nutritional program - feel and look better than ever.....actually better than when I mess up...(my body - esp intestines - love it when I eat well!). Take care and I look forward to many more positive posts from you!
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #15
    CAMaura said:

    Hey Maria -
    Very happy for you. My docs are using ultrasounds to clarify my liver lesions...two of four are cycts; we'll continue to work on the other two. It might help you as well! Hope you can enjoy the process of healing and gaining strength. All the best to you! - Maura
    Oh, I made it through nine of 12 sessions of FOLFOX6. That was it for me - and except for nights like tonight (dinner out) I adhere to a pretty strong nutritional program - feel and look better than ever.....actually better than when I mess up...(my body - esp intestines - love it when I eat well!). Take care and I look forward to many more positive posts from you!

    Hi Maria.....no matter how often I come here I am always in all honestly moved a little...yes...an odd tear or two well up in my eyes. Pretty emotional stuff for a fella, huh?Well, it is true 'cos knowing the heartache that this crappy disease forces on us all there is always a time to celebrate some good news....and that really does hit deep knowing there is good news in store with a lot of hope for our other friends here. All the best Maria, huggs, Ross and Jen
  • ccartwri
    ccartwri Member Posts: 82
    #16
    Maria
    I am 35 and am also in early menopause from the radiation. I considered having my ovaries (or my eggs harvested, to be able to have a child later) moved but I did not really have the time to play with. Like Tara and Jana, I went in to menopause early in my radiation. Sweats and hot flashes. I would be soaked when i slept. It has gotten colder but I am not having sweats anymore. Flashes are infrequent. Lexapro helped. I think many SSRIs help. I have actually stopped taking those because I wanted to see how I did anxiety wise and menopause-wise without lexapro, and I feel like I am doing okay. I had the tumor grow in to my posterior vaginal wall so had some reconstruction there. My exam a couple of months ago: the gynecologist said the stricture was not bad. I am to be dilating some and using local estrogen cream if I want. so...this may be an option for you...local estrogen. I believe the cream helps some with hot flashes as it is absorbed systemically ( a bit). I had my tumor tested for estrogen and progesterone receptors (not standard but my gynecologist agreed to do it) and it was negative. I think there has been no link to hormones and colon cancer. So...just some options. I feel with you on this one! This is so much to deal with and then you have to go in to menopause when you are supposed to be at your sexual prime!!!!
    I am so happy for you that you do not have mets! And you had the advantage of Avastin just in case. TAke care of anything that was even a thought! I begged my onco for Avastin (altho i am stage 3) but to no avail. I have a love-hate relationship with my chemo.
    I am scheduled for 12 rounds of Folfox, but was told by my onco that at NIH their standard is 6. I believe most people here have had more than 6 so I find that odd. I know most folks have to have dose reduction at some point. My oxaliplatin was reduced 25% after my fifth round as my platelets were low. Then after my seventh, they reduced my 5 FU.

    Best to you,
    Claudia

Discussion Boards