2017 Diagnosed-- A Place To Share "Whats Next"
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Thanks for keeping us posted, DodgersGirl. Maybe the fact that it is topical, rather than internal, will at least make things not as bad as your last chemo experience. I am hoping that things will go smoothly for you going going forward. Just saw my dermatologist on Wednesday. I am officially embracing my post chemo baldness, which could be permanent. None of the treatments have worked and my case is severe. I've never had any derm issues, but chemo is full of surprises, as you say.
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scarfgal—. Oh so sorry about the hair issues.
Do you know which chemo contributed? Can Taxol cause hair loss like Taxotare (sp?) ?? Asking so I can watch out for future treatments.
My hair is much thinner from Taxol (at least, that’s what I think) and stays thin from Anastrozole. So I do think Taxol cau
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We don't know whether it was Taxol or FAC that messed up my immune system. I had Taxol first and then FAC. I had very little hair toward the end of Taxol but then FAC obliterate the rest of my hair (and me).
FAC got so bad that I had to take a lot of steroids and other stuff to get through my last two treatments. All of those steroids caused my hair to grow back. So, I was miserable but was happy about the hair. As soon as chemo ended, my hair started falling out a few weeks later. The dermatologist at MDA did a scalp biopsy and diagnosed it as alopecia areata--the form of alopecia that is driven by an immune system having gone bonkers and attacking hair follicles. That happened about a year ago.
At first it was just one spot.. A few months later I was totally bald and hairless on my entire body! I don't know whether I even qualify as a mammal anymore! Cancer can really rob you of your dignity and challenge the very essence of your being.
So, I tried various treatments, including some newer ones, but nothing is working. The only good news is that my hair follicles are still alive. So, it is possible for me to grow hair in the future. I am not ashamed to say that I pray for my hair to grow back. At this point, however, I don't want to jeopardize my health by taking another med in order to try to get it back. The newest possible solutions have a small risk of lymphoma. The first one didn't work so now I am done. I just can no longer risk getting a second cancer just to have hair. I am hoping for spontaneous regrowth but that rarely happens when the situation is all over your body.
Sorry to go on about this. This just happens to be the week that I saw my dermatologist after reaching this decision to stop actively trying to get my hair back. So, I decided to finally tell the story about my hair. This took quite an emotional toll on me last year, as almost everyone gets their hair back, but I have learned to adapt. I actually don't wear a wig. The bald look actually suits the shape of my head and it is REALLY hot in Houston. So, I just rock it bald everywhere! Since I teach at a university, I just blend in and look like a really old student (I turn 53 next week) who shaved her head to make a statement or something:)
This week, I decided that cancer might have won the battle for my hair but I intend to win the war and live a happy bald life. After all, I didn't suffer through treatments and multiple surgeries just to be unhappy about being bald. I really have a great life and I don't want to jeopardize it with risky treatments to get it back. It just doesn't mean that much to me anymore.
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scrafgal- you have been through so much especially all the struggles with your hair. I hope whatever happens you live a very happy life.
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and there is no history of alopecia with me or my family...so chemo is the most likely culprit in this hair caper....
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scrafgal- We go through chemo hoping it will rid our bodies of cancer and allow us to live many years cancer free. There seems to be more side effects post chemo than during chemo. Alopecia is tough to deal with. Best of luck to you
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jo6359
Thank you.
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scrafgal—- wow. What a story. And you sound so strong in your attitude on how to cope. You are an amazing woman.
I know that story wasn’t easy to share but you will never know how many people you will help. Alopecia — a word we don’t want to hear. I remember how I felt seeing that word on my diagnosis area of my health report as if cancer wasn’t enough. I have two areas where hair didn’t grow back and always made sure I combed my hair just so to hide those spots.... so when the doctor wrote that on my chart, I was saddened. She hadn’t said anything to me. Just made the addition to the chart.
I was on A/C for 4 cycles followed by 12 weeks of Taxol.i don’t know which chemo left that SE
I hope to find your strength to be able to go outside as I am and move forward.
I hope a solution is discovered very soon. We endure so much and cancer changes our lives so much. We shouldn’t have to worry about our hair.
I am sure you are beautiful just as you are.
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Scrafgal, you just go! Stride through life, chin forward. I have a friend who got alopecia in university and within the year was completely bald and has remained so ever since. She rocks it. Used to be a tree planter. Can be a tough crowd and she was a crew boss and they were all intimidated yet asked to be on the crew of 'the tough chick who shaves her head." Your post is inspiring.
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Thank you, DodgersGirl!
When I first got diagnosed, someone gave me a card that read "Be your own kind of beautiful." That really has a lot of meaning for me now. I am single, but I've not really dated since my diagnosis. I felt that I had to get my mind and body together first! There just seems to be a lot of explaining to do, at some point:) Now that my reconstruction is done, and I feel finished with everything, I am just going to try to get back out there, bald and all!
Last summer, I was really depressed about it and avoided social events. However, in July last year, I had a special work-related event to attend--a launch party for that online program. I was expected to be there. I didn't think that I could do it. I just wanted to hide out until Fall classes started In the end, I just decided two things: (1) Eventually everyone would see me in the Fall, when classes would start and (2) It would be easier to just attend a single, big event where everyone would see me. That way, I would only have to explain my situation once, since all of my colleagues would be there.
So, I decided to attend the big event. I am happy that I did. Everyone was just happy to see me there. I just told them that my hair fell out, and that was that. Everyone knew about my treatment already so it was actually an easy statement to make and just move on. That event was a turning point for me emotionally. I realized that most people just accepted what I told them because, as I later discovered, some of them were dealing with hair loss too! I enjoyed the event and regained my confidence, over time, from that point forward.
So, it is hard, DodgersGirl, but I believe that you will find the same courage to go out as you are. When I had only a couple of spots, I used Toppik powder to cover small spots. It worked pretty well. Have you tried that product? My MDA dermatologist told me that it was okay to use (in terms of safety). It doesn't work for the baldness that I now have, but it might be someone for you to consider.
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Thank you, Runor!
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scafgal— sure an inspiring story. Very sorry you have to experience this SE but so grateful to learn of your testimony. I feel your strength in the words you shared.
Thank you for sharing.
Have not tried Toppik but will go look for it.
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Scrafgal - thank you for sharing your story. I'm glad you're in a better place with it now & have regained your confidence. We redefine womanhood, beauty, success all the time. And I think we also need to remember - we've got nothing to prove. We're fine just the way we are.
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Scarfgal: Oh gosh, sorry to hear about your hair not growing back. Today society is more accepting of baldness. Young kids are shaving their heads all the time. I think bald really can be beautiful. I've seen some women lately rocking the bald look and think wow that looks amazing.
When they told me I'd lose my hair I thought big deal. It'll grow back. When it actually fell out I was devastated. I didn't think it would have that effect. For over a year and a half it was depressing to look at myself in the mirror with no hair and scars. It's taken two years to grow back my baby fine hair. I now have to keep it short because it's much thinner and pretty fragile and doesn't really grow. I still have no arm pit and very little leg hair. I recently got my hair cut after six months of trying to let it grow out and the hairdresser said shall I make you another appointment for five weeks. I had to laugh. I said, ya, maybe for three to six months from now I'll need another cut.
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Thank you, Moth and Pink. Pink, I felt the same way...taken aback when it actually came out versus how I thought I might feel, before it happened. Glad you have enough hair to get a cut! The lack of arm pit, leg and other hair is not so bad. I am saving a ton of money on shavers, hair products/services etc! That's about the only upside!
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just an update— been applying the chemo cream twice a day for a week now for skin cancer on my arm. So far, no visible changes. Skin itches but nothing more yet. Not wanting to borrow trouble, but expect skin to flake off as the chemo cream kills cancer butso far nothing.
Have at least 3 more weeks of this.
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Glad to hear that things are manageable, DodgersGirl...Maybe things won't get too bad after all. Thanks for keeping us posted.
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Oh DodgersGirl, I had not heard about the skin cancer recurrence on your arm. Ugh. I had a melanoma in my 20s (way before breast cancer) so I can relate. Cancer is a super annoying little beast, but I know your determination and strength will prevail.
And thank you Scrafgal and all for the inspiring stories. My husband and I are still raising the assist dog I mentioned a few months ago, and it has also been wonderfully healing to "give back" in that way. I posted this photo before but am reposting because it's the only one currently on my computer and I hope it makes you smile! I hope to get more organized later this summer, and do better at keeping up with all of you.
Happy Fourth of July to the Americans!
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georgia- welcome back. I love the picture of your dog. So cute. Have a wonderful 4th of July
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Georgia1–. Love the puppy photo.
Once life settles down, we hope to rescue a dog or two.
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Scrafgal— after reading your story, I am no longer hiding in a ball cap. Been all over town without a head cover. Even sans hat while out to dinner last night. Just doing it makes each time afterwards easier.
I am sooo grateful for everyone here who shares their stories so we can call benefit!!
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This bc thing still sucks even after two yrs post last chemo. But I have learned the power of loving dog. My beagle is extremely food motivated enough she used to eat small bugs she can find in the house. I still remember one afternoon during chemo I gave banana pieces to my dog. She declined two In a row and wanted to tell me "mommy mommy you need that banana more than I do" I ate first and then gave her smaller pieces which she took very gently. She is attached to my hip when I use my flexitouch pump.
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dodgersgirl- sometimes I wish I just went bald in public but I didn't have the courage. I wore my beanies everywhere in public. At home I went bald. One of the main reasons was that most of my family and work friends did not know I had cancer. Looking back would I have changed it. I don't know. I don't have the head shape for baldness. Go for it.
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Georgia, your dog is beautiful! Glad that all is going well!
DodgersGirl, I am happy that perhaps my story helped to inspire you to venture out without the cap. It really does become easier, over time! In a few instances, people that I've known for a long time pulled me aside to tell me that they, too, had been diagnosed with alopecia and had been struggling with it for years. I wouldn't have know because they had been wearing wigs. They felt comfortable telling me because they saw my bad head. The more I keep living, the more I realize that almost everyone is dealing with some sort of personal struggle--cancer or otherwise.
Happy Fourth to all of the American members! I have been in Chicago for the Fourth and to celebrate my birthday this weekend! It seems incredible that I am 53 today and was diagnosed at 50! I think that the number of reconstructive surgeries stretched out the treatment time. So, I am just now finished with things at 2.5 years post-diagnosis!
Glad to be celebrating with my sister tonight. We both remembered that 2 years ago, my MO scheduled chemo on my birthday. I wasn't too happy about that but I was even more disappointed (I think) when I got turned away because my blood counts were too low! I've come a long way since then!
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scrafgal- have a wonderful birthday celebration. Congrats on being two and a half years post diagnosis.
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Scrafgal- happy birthday this weekend!!
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Thanks jo and DodgersGirl! Back in Houston! How's the chemo cream going, DodgersGirl?
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Scarfgal- So far, so good with the chemo cream. The area is red and mad looking but it doesn’t hurt. Also found that the bandaids won’t “stick” to the skin where the cream has been applied. The hardest part that you have to wash the area and let it dry for 10 mins before applying chemo cream. That 10 mins to wait for skin to dry twice a day is getting tiring!!
I see my dermatologist in 2 weeks. Hope to know more about what’s next. Sure hope the chemo cream is doing it’s job
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well, I'm glad to hear that it doesn't hurt...hoping that lasts until the treatment is done!
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Dodgersgirl, could you use the blow dryer on your face? Since wehn does skin take 10 minutes to dry? I'd be getting all impatient and whipping out the hot air gun...let's speed this process up.
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