Losing my hair

Canadian Sandy said:

Your hair is beautiful abita!

Your hair is beautiful abita! Always remember it will grow back. I can understand being upset because of the reunion.

I am not sure how true this is, but the infusion nurse said that she had a patient who had hair fall out when started with this drug, but that it started growing back even though she was on it for two years. 

I grew up in a very small Louisiana town. So rural that 7 towns went to the same high school. Kind of where everyone knows everyone. I moved away 30 years ago, so don't see people much. I am not even sure why looking good matters so much to me. I have gone to the corner store here on days where I forgot to brush mmy hair or wash my face, but for some reason, I want to be perfect at the reunion.

JanJan63 said:

When I get the immunotherapy

When I get the immunotherapy they give me an Rx for antibiotics, too, but only for the first few weeks. Those pimlples are a huge pain in the butt. They get to be so many that they're really close to gether and almost on top of each other. And they're not like real pimples, they're different. I get them on my face, scalp, chest, and back. It's horrible. And the immunotherapy always targets something else and I end up going off of it early. It seems like I can do 4 rounds and that's it. At that point something always goes south and I have to stop it.

Its quite effective, though. It always brings my CEA down substancially. I'm sure they're going to want me back on it again soon. I wanted the summer off because it makes me really sun sensitive but my CEA is now over 70 so I think they'll be getting me back in soon.

Jan 

That sounds a lot like the targeted drug I am on, cetuximab. I am surprised immunotherapy does that with the acne. I thought the side effects were that it could put the immune system to attack organs in extreme cases, but did not see any acne/rash related ones. I asked about the two immunotherapies that are currently approved for colon cancer here in the USA. He said that those require mutations that I do not have. 

JanJan63 said:

The drug is called Vectibix

The drug is called Vectibix or Panitumumab. I think the difference may be whether it's in the states or here in Canada. They say it targets a chemical or something like that that's in the cancer but that same chemical (not the right word, really) is also in the skin of the face and upper body so it attacks that, too. They say the rash is an indication of how well it's working.

I've also had it go after any soft tissues from my private parts to the backs of my knees. Sometimes I can barely sleep because it's so itchy and the cream I'm prescibed only does so much. It's not terrible but I hate being on it. And, luckily the rash goes away withut leaving a mark. I've had the rash inside my ears and nose and it's just miserable.

Jan

is your oncologist actively looking for immunotherapy for you? Apparently, these can work miracles in some cases. The current ones approved for colon cancer require the patient have a mutation that I do not have. Oh, looks like they do cause a rash also, but you know, worth it for a miracle.

"Immunotherapy is the use of medicines to help a person’s own immune system better recognize and destroy cancer cells. Immunotherapy can be used to treat some people with advanced colorectal cancer."

Joan M said:

I lost all of my hair after just one infusion of Folfiri

It took a long time to grow back and only got to be just below my shoulders then it fell out again.  It grew back for a few months and then fell out yet again,  It is in the process of growing out and is only about a half inch long. 

I was on Folfox 3.5 years ago after  I was first diagnosed.  It made my hair thin out alot over the course of treatment and I finally got a short hair cut.  I wore scarves and also the free wig through the American Cancer Society ordered from TLC catolog at the cancer center.  It looks very natural and I wore that for a couple of years.  I missed my long wavy hair and couldnt afford the ones that were as long as my natural hair at the salon - they didn't even order them as long as my hair was and the 16 inch length was 3800, and 4200 for 18 inch length. 

So I found a 22 inch long human hair wig with full lace cap online through Wigsbuy.com and it only cost me $230 shipped from China. IT looks so natural that no one can tell it's a wig.

It was from China and took along time to get here.  While waiting, I ordered a couple cheaper wigs through Paula Young wigs.  I got 3 for $122.  They also look great and everyone's favorite wig is one I paid about $40 for, and one that was on clearance for $29.  

I had really long naturally wavy red hair and my long flowing hair was my signature.  It time getting used to the loss of my hair.  Now that I am used to wearing the wigs, it isn't so bad.  My husband doesnt care if I wear a wig, scarves, cap or go bald.  I am very lucky in that regard.  Although I wear his favorite wig most of the time just because i know he likes the way it looks on me.  The long one that I love the best and feel like I can recognize myself in the mirror is worn the least.  I wear it for special occasions, because I feel it looks best on me.  but is hotter and more maintainence involved.  

If you are on irinotecan for an indefinite period of time, you may not get your long hair back.  I have dreams that my hair has grown back long and lucious, but then I wake up.  It is something that I have come to  terms with but one can always dream.

I hope that can help you a bit, and totally understand how you feel.

 

Joan     

wait, you mean it won't grow back even if you stop taking it and switch to a different drug?

Joan M said:

No, I am still on the irinotecan

My hair falls out and then grows back in even though I am still on the same chemo.  Irinotecan and 5Fu on 3 week cycle for life or until something better comes along.

I am going to ask my doctor about the cetuximab or whatever you call that drug you are on.  My TEMPUS test did mention some that can help with the various mutations that I have, but all the doctors believe that the Folfiri combo is the best one for me at this time.  I really don't know why.  I have been hospitalized 3 times for side effects and several times couldn't get chemo due to low white blood count.   AND I'd really like my hair to grow back.  

Someone else on here said they eventually got to just having the cetuximab.   It is what I am hoping for after my first hope of a miracle. 

Joan M said:

I'm praying for a miracly too!

Let's just keep on praying and believing in that miracle!  and then we will both be cancer free and get our beautiful hair back !

Yes!