Starting Treatment Soon

Kim Gaia
Kim Gaia Member Posts: 73

Hi everyone. I just joined. I am a 63-year-old female and was recently diagnosed with Squamous Cell Cancer of Anal Margin/Canal. Same cancer that my mother had. I am awaiting my appointments with my 2 oncologists who will be treating me (Chemo Onc & Radiation Onc).  I have been reading up on the Chemo-Radiation treatment that lies ahead for me and am quite concerned about the lasting adverse effects of it and its impact on quality of life in many ways. But of course, we do what we must to stay alive.

What is the story on hair loss with this particular chemo? Is it complete hair loss? Does that occur midway through? Does the hair start growing back once treatment is finished? Grows back same as before? Or thinner? I don't know why I am fixating on hair loss when the other consequences of Chemo-Radiation can have a much bigger impact on quality of life. Just where my mind is going.

Good luck to all,

kim

Comments

  • Wellzen
    Wellzen Member Posts: 42
    Kim,  I am glad you found

    Kim,  I am glad you found this group. Sorry you have been diagnosed. I did not have alot of hair loss. Just a little thinning. 

  • Kim Gaia
    Kim Gaia Member Posts: 73
    Wellzen said:

    Kim,  I am glad you found

    Kim,  I am glad you found this group. Sorry you have been diagnosed. I did not have alot of hair loss. Just a little thinning. 

    Thanks for that info Wellzen.

    Thanks for that info Wellzen. I hope I am as lucky with hair. I was expecting total hair loss for some reason. Did your thinned hair thicken up again after treatment and go back to normal? Or did it remain thin after that?

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2018 #4
    Kim Gaia

    So sorry that you have gotten a diagnosis of anal cancer and also sorry to hear that your mother had the same type of cancer.  I was treated in 2008 for anal cancer and, while I have experienced a few long-term side effects, they are very manageable.  I will say honestly that they have not really had much impact on my quality of life.  As for hair loss during treatment, I lost about a third of my hair.  It all grew back, which took awhile, and it may be slightly thinner than it was before.  That was my experience, however, many people do not have any hair loss, so perhaps you will be fortunate too.  I would focus primarily on learning more about the side effects from this treatment that will impact you during treatment because you have to jump that hurdle first, then worry about any long-term issues.  I wish you all the best as you begin this journey.  You will get through it!

  • Kim Gaia
    Kim Gaia Member Posts: 73
    mp327 said:

    Kim Gaia

    So sorry that you have gotten a diagnosis of anal cancer and also sorry to hear that your mother had the same type of cancer.  I was treated in 2008 for anal cancer and, while I have experienced a few long-term side effects, they are very manageable.  I will say honestly that they have not really had much impact on my quality of life.  As for hair loss during treatment, I lost about a third of my hair.  It all grew back, which took awhile, and it may be slightly thinner than it was before.  That was my experience, however, many people do not have any hair loss, so perhaps you will be fortunate too.  I would focus primarily on learning more about the side effects from this treatment that will impact you during treatment because you have to jump that hurdle first, then worry about any long-term issues.  I wish you all the best as you begin this journey.  You will get through it!

    thank you! :)

    thank you! :)

  • Wellzen
    Wellzen Member Posts: 42
    Kim All my hair has grown

    Kim All my hair has grown back. I hope your treatment goes smoothly. This site is wonderful.  Greet place for information and other people that have gone through this

  • Scubajoe
    Scubajoe Member Posts: 39 Member
    You got this

    Hi Kim,

       Sorry to hear about your diagnosis.  I have recently gone through treatment and had a biopsy three months after treatment which just revealed scar tissue.  I did not have any hair loss on my head but I shave my head anyway so hard to say.  I did lose all of my hair in the pelvic region.  Probably a bigger deal for guys than women.  During treatment be sure and use plenty of the aquaphor for radiation burns.  Even if you do nt feel you need it you will need it after a few weeks in.  My worst pain came exactly two weeks after radiation treatment ended.  I did not have diahrea but with the stool softeners etc I found it difficult to make it from the bedroom to the bathroom some mornings so I did what I needed to do and had a 5 gallon bucket not too far away with a garbage bag just in case.  This did come in handy for me mre than a few times.  Three months out and my only issues are instead of going once a day like before I am going to the bathroom maybe 3 times all usually a couple hours apart.  I was healing up nicely then the biopsy put me back some with a lot of pain with the bowel movement.  Unfortunately this is an area full of nerves.  Be sure and start talking with pain management right at the beginning so they can help manage the pain.  Also try and eat eat eat.  I lost about 25 lbs during this and have about 8 more to put back on.  Wishing you all the best in your treatment.  This site is wonderful with some wonderful people to help with any questions you may have.

     

    All the best,

     

    Joe

  • Kim Gaia
    Kim Gaia Member Posts: 73
    Scubajoe said:

    You got this

    Hi Kim,

       Sorry to hear about your diagnosis.  I have recently gone through treatment and had a biopsy three months after treatment which just revealed scar tissue.  I did not have any hair loss on my head but I shave my head anyway so hard to say.  I did lose all of my hair in the pelvic region.  Probably a bigger deal for guys than women.  During treatment be sure and use plenty of the aquaphor for radiation burns.  Even if you do nt feel you need it you will need it after a few weeks in.  My worst pain came exactly two weeks after radiation treatment ended.  I did not have diahrea but with the stool softeners etc I found it difficult to make it from the bedroom to the bathroom some mornings so I did what I needed to do and had a 5 gallon bucket not too far away with a garbage bag just in case.  This did come in handy for me mre than a few times.  Three months out and my only issues are instead of going once a day like before I am going to the bathroom maybe 3 times all usually a couple hours apart.  I was healing up nicely then the biopsy put me back some with a lot of pain with the bowel movement.  Unfortunately this is an area full of nerves.  Be sure and start talking with pain management right at the beginning so they can help manage the pain.  Also try and eat eat eat.  I lost about 25 lbs during this and have about 8 more to put back on.  Wishing you all the best in your treatment.  This site is wonderful with some wonderful people to help with any questions you may have.

     

    All the best,

     

    Joe

    Thanks very much for your

    Thanks very much for your tips, Joe. And congrats on your 3-month post-treatment biopsy only revealing scar tissue! That must be a wonderful feeling to get that news.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Kim

    I totally focused on hair loss as well! It's not as shallow as it sounds, to me seeing a good friend lose all her hair made her look so sick and vulnerable. i used chemo cold caps during mitomycin C infusion. You can google it and read about it. I lost a lot of hair too but you can lose about a third of your hair and it still looks ok. I only washed my hair once a week and did not color, perm, use curling iron, blow dryer or hairspray. I used a natural bristle brush. I looked up ingredients that encouraged hair growth and looked for those in my shampoo and conditioner. I kept shedding for about 4 months after treatment. My hair has grown back and is back to normal thickness now. I've even had to have it texturized (thinned) recently because of my unruly curls! I'm 2 years out from treatment and recently had about 3 inches taken off, because my hairdresser noticed that the last 3 inches of length were a lot thinner and more scraggly- we figured out that was the hair I hadn't lost in treatment. It felt good to get that cut off and have one more way to put the cancer behind me.

  • Kim Gaia
    Kim Gaia Member Posts: 73

    Kim

    I totally focused on hair loss as well! It's not as shallow as it sounds, to me seeing a good friend lose all her hair made her look so sick and vulnerable. i used chemo cold caps during mitomycin C infusion. You can google it and read about it. I lost a lot of hair too but you can lose about a third of your hair and it still looks ok. I only washed my hair once a week and did not color, perm, use curling iron, blow dryer or hairspray. I used a natural bristle brush. I looked up ingredients that encouraged hair growth and looked for those in my shampoo and conditioner. I kept shedding for about 4 months after treatment. My hair has grown back and is back to normal thickness now. I've even had to have it texturized (thinned) recently because of my unruly curls! I'm 2 years out from treatment and recently had about 3 inches taken off, because my hairdresser noticed that the last 3 inches of length were a lot thinner and more scraggly- we figured out that was the hair I hadn't lost in treatment. It felt good to get that cut off and have one more way to put the cancer behind me.

    Thanks for this info,

    Thanks for this info, Mollymaude. I will look into chemo cold caps. I currently take biotin and collagen supplements (among other things) and am thinking that might help with hair regrowth...

     

     

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Kim

    Yes I forgot to mention I took biotin also.

  • Razzi
    Razzi Member Posts: 3
    Hi Kim

    I had radiotherapy everyday for 6 weeks, with chemo for the first and last week, and all my scans have been clear since then. That was in 2016. It was manageable, I didn't lose my hair, a little came out but I have thick hair anyway so it wasn't noticeable at all. The chemo made me a bit sick, especially the first week, so take lots of anti-sickness medication. I lost my appetite, but could eat poached eggs on toast, every day! The radiotherapy really burns away at your bottom, so get loads of ointment etc from the hospital, but this will heal. The longer lasting effects I've found are having unreliable bowels, I take Loperamide to help with this, and I also have aches and pains in my pelvic region, hips and legs, but it's not too bad, and I'm hoping it'll get better in time. Do try to get plenty of rest, the fatigue is awful, never experienced fatigue like it. But, I'm grateful to still be alive, and I'm sending you warm wishes and I do hope the treatment goes well for you. By the way, I'm in the UK, so your treatment might be a bit different. Best of luck to you anyway

  • Kim Gaia
    Kim Gaia Member Posts: 73
    Razzi said:

    Hi Kim

    I had radiotherapy everyday for 6 weeks, with chemo for the first and last week, and all my scans have been clear since then. That was in 2016. It was manageable, I didn't lose my hair, a little came out but I have thick hair anyway so it wasn't noticeable at all. The chemo made me a bit sick, especially the first week, so take lots of anti-sickness medication. I lost my appetite, but could eat poached eggs on toast, every day! The radiotherapy really burns away at your bottom, so get loads of ointment etc from the hospital, but this will heal. The longer lasting effects I've found are having unreliable bowels, I take Loperamide to help with this, and I also have aches and pains in my pelvic region, hips and legs, but it's not too bad, and I'm hoping it'll get better in time. Do try to get plenty of rest, the fatigue is awful, never experienced fatigue like it. But, I'm grateful to still be alive, and I'm sending you warm wishes and I do hope the treatment goes well for you. By the way, I'm in the UK, so your treatment might be a bit different. Best of luck to you anyway

    Thank you Razzi. An

    Thank you Razzi. An congratulations on your clear scans.

    kim

  • NotMeNotAC
    NotMeNotAC Member Posts: 2
    Hair Loss - Everywhere

    Started treatment, chemo and radiation in October, 2017.  Within 3 weeks, I noticed the hair loss; first from my head.  Hair was everywhere, in the shower, on my bed pillows and on the back of the couch!  Finally I called in my BFF/hair stylist to shave my head.  Luckily I didn't look too bad being bald but I did buy a few wigs.  I found that I was cold too so I bought a few cute caps to keep my head warm.  The hair started to grow back within 4 weeks but not curly (as some claim that it should have), straight as an arrow and WHITE.  Yes white.  Now I am 60 years old but I didn't expect white.  I have been told that it looks regal, so I'll take it.  Of course, all the pubic hairs and thigh hairs fell out but the hair on my lower legs looked like a forest.  I wasn't allowed to shave because if I cut myself I could bleed to death!  Also, my eyebrows grew bushy but my eyelashes got thin.....explain that one?  The American Cancer Society as the Florida Hospital, Flagler, offered me a free wig and several free caps!  My husband thoroughly enjoyed me trying on the wigs!  Being bald for a few weeks isn't as bad as you may think, as a matter of fact, you should rock it!

  • Kim Gaia
    Kim Gaia Member Posts: 73
    Thank you for the info,

    Thank you for the info, NotMeNotAc. :)

    kim

  • GaryT2185
    GaryT2185 Member Posts: 3
    I have recently been

    I have recently been diagnosed with rectal cancer.  They say it is real low in rectum.  Surgeon says with removal there will not be nothing left to connect to. Colosomy will be needed.  They have decided that it would be best to do chemo and radiation first to shrink it.  I am having a port put in, so they can put a pump on me for chemo. Will have radiation at same time.  Any advice will be deeply appreciated.  Thanks

  • mp327
    mp327 Member Posts: 4,440 Member
    GaryT2185

    I'm sorry you have a reason to join this support group.  You will get support here, so please tell us what you need.  Just to be clear, is your cancer rectal or anal (as they are two different cancers regarding location and type of cancer cells).  I am sorry to hear that your doctors feel that a colostomy is your best option post chemo and radiation.  I do not have any experience regarding colostomy, but there are others on this board who do, so perhaps they will chime in and give you some helpful information.  I wish you all the very best as you head into this journey.  I hope all goes well for you.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Gary

    Welcome to the group, sorry you have to be here. Are you getting 6 weeks of daily radiation with two rounds of chemo? MitomycinC and 5florouracil? That's the basic regimen many of us have gone through. Like the post above rectal and anal cancer are different cell types so it's best for you to find out which it is. Anal cancer is made up of squamous cells. Either way there are people on this site who will do their best to help you and support you- but if you find your cancer is rectal not anal the colorectal site might help you as well.

  • smc0057
    smc0057 Member Posts: 17
    Hi.  I have not had any hair

    Hi.  I have not had any hair loss on my head.  haha. But I have lost most of my pubic hair, strange.  I blame it on the radiation.   At least it's in a place that isn't visible.   Good luck on your treatment.