Losing my hair

Ruthmomto4

That’s such guy thing to say

becsuse losing Your  hair is very traumatic and probably not as big of a deal to guy. I know my husband only did one treatment with irinotecan in it and lost a ton of hair. Your hair is beautiful and you have the right to be sad and mourn it. 

abita

Ruthmomto4 said:

That’s such guy thing to say

becsuse losing Your  hair is very traumatic and probably not as big of a deal to guy. I know my husband only did one treatment with irinotecan in it and lost a ton of hair. Your hair is beautiful and you have the right to be sad and mourn it. 

Thank you!

Thank you!

Canadian Sandy

abita said:

I am not getting the diarrhea

I am not getting the diarrhea, and the fatigue isn't even that bad. I do have about 6 pimples. The hair loss though is breaking me.

I did get the diarrhea and in

I did get the diarrhea and in my opinion it was worse than the hair loss. Spent 3 weeks in the hospital as lost my electrolytes.

Canadian Sandy

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.

abita

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

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

abita said:

I thought you had said you

I thought you had said you were on a targeted drug, not immunotherapy. My targeted drug has the pimples side effect, but I am practively taking an antibiotic and using creme de la mer to get rid of the red that hurt.

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 

abita

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

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. 

abita

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 

I know you have told me

I know you have told me before, but what is the immunotherapy drug you are taking?

JanJan63

abita said:

I know you have told me

I know you have told me before, but what is the immunotherapy drug you are taking?

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

abita

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

That is a targeted drug, not

That is a targeted drug, not immunotherapy. Immunotherapy drugs make your immune system recognize that cancer is bad so that immune system will fight it. I think the one you are on is like mine. Mine blocks a protein that the tumors and skin needs, hopefully then starving the tumor. The two names you say aren't by country. One is the drug name, one is the brand name. Have you been considered for immunotherapy trials. Glad to know that the ance doesn't scar. I have had some on my face that bleed when I wash it. Here is what our drugs fight:

Epidermal growth factor receptor (EGFR) is a protein that helps cancer cells grow. There's often a lot of it on the surface of cancer cells. Drugs that target EGFR can be used to treat some advanced colon or rectal cancers. These include:

• Cetuximab (Erbitux)
• Panitumumab (Vectibix)

abita

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

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

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     

abita

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

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

Joan M

abita said:

wait, you mean it won't grow

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

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.  

abita

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

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

abita said:

Someone else on here said

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. 

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 !

abita

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!

Yes!

Lovekitties

something to check

One of our previous members said she had some success with a "cool cap" during treatments to help reduce hair loss.  I don't know how that works unless the cool temp reduces the blood flow to the scalp and therefore reduces chemo to that area.

Unfortunately, I don't have more info.  She died from the disease.  I will look and see if any msgs remain about it.  If I find something will post.

Marie who loves kitties

Ruthmomto4

Yes the cool cap!!

at 30 a friend was diagnosed with breast cancer and was getting married so she wore the cool cap for all of her treatments and barely lost any hair.

abita

I ordered a wig today. It

I ordered a wig today. It really did look like my real hair. The lady was awesome,  and made me feel good enough they I actually got one just like my hair before chemo. She put the red swatch in what is left of my hair, and it was the exact same color so kismet I guess. It was cool that I could add barrettes, even some kinds of ponytails,  part however,  style however. Glad I decided to check it out.