Starting Chemo April 2009

I have a question about hair. I am just 2 weeks PFC and have had some fuzz growing for about 5 weeks or so. I was recently on Taxol and have heard it's common to get hair growth during Taxol.  Anyway, I have a decent thickness of hair on the back of my head, but the top is very thin and I'm still missing a lot of hair. Tonight I noticed the hair on top of my head is coming out! Just like it did 2 weeks after starting chemo. Is this normal? None of the other hair is coming out.  My husband thinks it has to come out before the "real hair" comes in. What is going on?

Has anyone else had hair loss before the fuller hair comes in?

Thanks for any advice,

Pam

Hi, it's great to hear that everyone is pretty much coming out of the chemo fog. 

Lena, sorry about your cold, but glad to hear how well you are doing. Seems like you are getting a lot more energy and able to get back to work. (Among other more interesting activities!) I'll be thinking about you on the 10th, praying that your PET scan results are good!

Lesley, Good to hear that you have at least one major surgery out of the way, and you are doing well.  I am considering the nipple tattoo also, but haven't actually made up my mind.  You'll have to let us know what you think when you have it done.

Pam, My general surgeon did the tumor marker (or CA27.29) blood test after I was diagnosed, but before the mastectomy.  It was 48.4.  She was excited, because she said that it indicated that I had cancer, and if they gave it to me in the future, they could determine if the cancer came back, etc.  Well, my oncologist just groaned.....he said it is not an accurate indicator.  Sure enough, after the mastectomy, it was 50 something, and now after chemo it is 61.7. He says he feels obligated to continue to follow up once the test is done. I noticed later that on the lab slip, it says "Assay results should not be interpreted as absolute evidence of the presence or absence of malignant disease"!

Betsy,  Thanks for the info on the tumor marker test, what your doctor says makes sense, it makes me feel better. 

Hey, I did it, I went to work this week sans wig!  I was so nervous, I work in a school office, and felt like it was the first day of junior high and I was wearing something of my grandmothers or something!  (Oh my gosh, everyone is going to stare at me, make fun of me, etc., etc.)

In fact some of the kids did quite a bit of staring, and I heard a couple of whispered comments (WOW, Mrs. Smith got a HAIRCUT!); but I also had a lot of people tell me that I was one of the few people they had ever seen that could pull off this look, and it looks great.  I'm not sure if they meant it or were just being nice, but it meant me feel better. 

Linda 

Chelev,

Thanks for the input. I am freaking out a bit. I noticed that the lashes and brows that hadn't already fallen out are starting to go, but that didn't worry me as much as the hair.

I'm relieved that I won't be bald forever. I don't mind waiting, I just don't want to remain bald forever!

Pam

I'm 12 weeks after Chemo and at just at the same stage as you, JudyNaomi. It's so slow and very disheatening.

Judy...still thinking that these stomach issues need to STOP for you.!  Maybe you didn't drink enugh whisky as a 21 year old!  Just kidding!  We have all gotten alot quieter here on this thread..busy with other things..which is a good thing!  My DH and I took my "baby son" to college on Saturday..which was heartwrenching...but I tried not to show him how I felt...I just texted him and asked him if he was getting enough to eat and he said "Mom..enough with all the questions"...guess I'm too much of a mother hen but I have to worry..that is what moms are for! On Sunday we took my daughter to a casino to celebrate her 21st b-day  ( I know that was probably bad)..but you know what my dh and I lasted alot longer than my daughter and her boyfriend..I guess kids aren't as crazy as we were when we were in our 20s!    The best thing about the weekend was the word CANCER never came up..I felt "normal"  and darn it I'm going to continue with that feeling!    Maybe things will never be the "same" but darn it...I'm sure as heck going to try.

Love to everyone...hopefully most of our jourrneys are done or almost done and we can look back and remember how everyone supported everyone and got us through this mess

I know many people who take Fosamax without any side effects at all. I took it for 3 years when I first was dx with osteopenia and never felt anything.

Hi all

Hope everyone had a good Labor day wknd! Titan, thanks for your kind words - how are you doing?

I think I may be feeling an improvement, but still have some heartburn and am scared to try different foods in case it causes real discomfort. I am halfway through the meds, so hopefully I will continue to see a slow improvement.

Have a good evening, hope you are all feeling well!

Judy x

Yay, Titan!!!!!!  I am SO relieved you are okay!!!!!    Yay!!!!!

I had the same thing happen to me the week of my lumpectomy - the MRI we did the week previous indicated something suspicious in my left breast - did a biopsy (ouch ouch ouch, it was very deep) and it was nothing.

I think we will be freaking out every six months!  Every little cough, bump, lump whatever!  Oh well, I guess we should just enjoy our time between visits to the doctor and try not to worry about it.

The doctors/radiologists etc didn't seem very concerned about my microcalcifications either but I think they are just being very careful with me and all of us...better to know now than to wait and have issues..

Helen..I'm sure that the lump is nothing and you will have good news!

Chelev..glad yours came out OK too!

Hey Titan - what a relief...I'm doing a happy dance for you! SB practicing my cartwheels.

Helen - have you read anything about lymphedema? It usually affects the arm they do the snb on. I've heard it's not something that you should ignore....not that you would. I hope it turns out to be nothing.

I haven't told the Dr. yet about my decision to reject the drug option for osteopenia. I've decided calcium, Vit D and weight training for a year is what I'm going to try to get these weak bones back in shape. If that doesn't work...then maybe...I will move on to drugs. 

My "real fuzz" as my dh puts it, is now turning to "real hair". Little wild and crazy ones... but some have color!!!!

Chelev - is that make over coming up? I bet you are excited.

Judy - My heartburn is gone for the most part. I can always tell by my mouth if something is going to cause me problems. It still gets rubbed raw with some food. But for the most part, I'm back to eating everything is sight. Not good for the weight...but great to be moving beyond chemo. I hope you are feeling better each day.

Has anyone else felt the numbness of taxol coming and going with their hands, feet or legs? Everyone once in a while everything gets numb and tingly...it's probably just latent se's.

Hugs to all.

Betsy

Alaina, geez, glad it all ended up okay - and that you are back home!! 

Betsy, yes the makeover / trip is coming up - I leave on the 23rd.  Had a minor gown crisis but it is resolved- apparently I am still swollen under my arms from the rads, and the dress I ordered in the eggplant color that I loved was just too tight in the bust.  I ran down to Nordstrom to return it in person and found the next size in a deep navy.  now will run it to the alterations shop to get it taken in so it fits.  but, getting excited for the trip - hope I have enough hair to be able to see a difference!

HELLLOOOO!  How are all of you guys??? I'm back from vacation, my son's soccer tournament and trying to recover from school starting.  Not sure if it is harder for me or my kids.  I'm still trying to believe that I have a high schooler and an 8th grader.  Where has the time gone?  You guys are busy, I'm not sure I have a week or two to read back and get all caught up, so... I'm just going to try and jump in and see if I catch on.  TITAN - good news for you, I'm sooo happy to hear that - you better get going on that cartwheel now.  How are rads going?  JUDY - Glad that your stomach is on the upswing, you deserve a break.  BETSY - I love the new pic, you look great.  Hope you're feeling better.  CHELEV - you really get around on these boards, I see you every where.  I tried to post some pics from my NOVA get together before I left for the beach - UNSUCCESSFULLY!!!!  Now that I'm back I'm going to try again with my hair pic on the "hair hair hair" thread.  I ended up just having to post a link.  This time I WILL WIN -not the computer.  I love ya all and I'm glad to be back.  HUGS, Dawn

Lena,

Thinking of you today, hope your Petscan results came back clear!

Heya girls,

How are you all feeling? I think I finally shook off the darn cold, and, 8 weeks PFC my brain is making a real comeback. I mean, the total absolute blinding fog I'd been in while on chemo started to clear at about 4 weeks PFC but now I can actually think straight and I'm getting creative sparks again! Focus and memory are still not back 100% yet -- seems my cognitive function is returning in bits and pieces -- but there's significant improvement now! I know because I made serious progress on one of my unfinished Sims hacking projects (and got ideas for several new ones).

Okay, about those test results -- I had a MUGA scan, CT scan, bone scan and the PET scan, and yes I had my oncologist appointment on Sept 10th where we discussed these, so....drumroll please:

1. MUGA scan good -- no heart damage (I'd had a MUGA scan prior to chemo also).

2. My original 12 cm breast tumor shrank down to 4 cm. 

3. My lymph nodes are ALL CLEAR now.

4. The bone met is still there, but it's smaller and less metabolically active, and, there were signs of the bone healing.

So it looks like maybe the chemo kicked the cancer's ass as hard as it kicked mine. I still doubt I'd ever do it again, but since I did it this time, I'm glad it wasn't for nothing.

Also, though, something ELSE turned up on the CT scan I didn't know about -- evidence of one or more fibroid tumors in my uterus. So my oncologist ordered a pelvic ultrasound for me, which I'm having Thursday (the 17th). Hmmmm, well, if the ultrasound confirms fibroids, this could be an opportunity for me to get rid of the one part of my body I never had any use for anyway! LOL. I just hope I don't catch any more colds while I'm at the hospital having the test!

My oncologist told me there's a "tumor board" at the cancer center, where all the oncologists discuss particular cases, and he wants to discuss my current status with the tumor board -- since my tumor is now down to an operable size and the nodes are clear, it's now actually possible for me to have a mastectomy. Yet on the other hand, he also says that usually for Stage IV patients, they only do mastectomies when the tumors break out of the breast skin and/or ulcerate, ooze and so on. Even though I'm a Stage IV, none of that happened with my cancerous right breast. True enough, my right breast is screwed up looking (misshapen), but the tumor is inside it and there are no ulcerations, etc.  So my current instructions, other than going for that pelvic ultrasound on Thursday and staying on my Tamoxifen. are to call him at the end of the month for after he discusses my case with the tumor board, and, my next appointment (unless the tumor board says he should see me sooner) is November 5th.

Now, on to our regularly scheduled post...

JudyNaomi -- Glad you like my posts, but, I really don't have much of a life except for what goes on between my ears -- which is why I got so horribly depressed when the chemo brain hit and took away all my imagination/creativity, mental focus, detail orientation and memory. Now that the chemo brain is subsiding, guess I do kind of need to "get on with it" because I have Stage IV IBC, which means I probably have only a very few years left. How's the heartburn, any better yet? Oh, and about your lashes -- I kept losing both lashes and brows well after I finished my chemo, but they haven't grown back at all yet. So I have fuzz on my head, and no brows or lashes.

Titan -- I'm SOOO glad the calcifications in your left breast turned out NOT to be more cancer! Um, as for writing a book -- already wrote 12 of them (and had started a 13th which didn't get finished because I got addicted to The Sims when I was 30,000 words in!), but I have absolutely no desire whatsoever to deal with the publishing industry and I don't want to be a "famous author" anyway either (I'm introverted to the point of reclusive), so they're staying in my computer. I'm happy being "just" an amateur writer.

Betsy -- Yeah, that's what I told myself about my Mycelium Head (colorless/sorta whitish fuzz) -- "it's the beginnings of hair." My mycelium has now sporulated, just keep calling me Fuzzie the Moldie! LOL. By that I mean now I do see color, and although I can't tell if it's my exact pre-chemo color, it's definitely some shade of brown. Of course I'm still too unsightly to open my apt door without a wig, but, once again, "it's the beginnings of hair." So I try to be positive about that much. Um, I forgot what PeeWee Herman looks like...but somehow I get the impression he's not what *I* want to look like! About Tamoxifen and osteoporosis -- hmmm, I guess THAT'S why my oncologist told me to keep taking those darn calcium supplements after I finished my chemo (and he put  me on Tamoxifen).

ALAINA!  -- Wow, you're back! And you wrote a really cool long post, too! :-) OK, I'll be redundant and say what everyone else is saying -- I'm glad you're OK and it's good to see you. About your surgery -- my, oh my, you must be big busted. I don't think BOTH my breasts would weigh almost 5 pounds, much less one of them! But it's good to hear the operation went so well...I'm so totally with you on the dread of  throwing up issue, though, when you said "but I HATE HATE HATE throwing up with a passion immeasurable! I would rather be bleeding!"  OMG I totally agree with you. In fact, my dread of nausea/vomiting was the #1 reason I originally didn't want to be treated for my breast cancer (I didn't know that the nausea/vomiting could be controlled) -- never mind a preference for bleeding over barfing, *I* felt I'd rather be DEAD than be nauseous and throwing up all the time! About TV -- I totally stopped watching TV in 2001 because IMO it went from 80% stupid and boring to 100% stupid and boring, and by this time, even the sound of a TV on is irritating to me. When I'm not home, I entertain myself with my laptop (mostly) or books I bring (occasionally). Like, I waited for a couple hours after all the admission stuff for both my surgical breast biopsy and my port implantation surgery but I wasn't bored because I had my iBook. :-) Oh, and no, you're not the only one who likes hospital "socks." They're more like house slippers actually, and I kept mine -- took 'em home, threw 'em in the laundry and continue to wear them occasionally when I'm in the apt.

Dawn -- Hope you enjoyed your vacation -- and I'm happy you were well enough to GO on a vacation!

~Lena.

Hi, everyone!!  I have been so busy posting on all of the other forums, and yes, out there being busy and living - that I will answer Dawn's query - HELLO!!!

Lena, sounds like you are really doing well - it does get better and better each week, and glad your once glorious hair is coming back with some color - it does take a while but when the "real" growth starts, there is color.  I think mine came back a little lighter than originally, but I'm in the sun alot down here in Florida, whether I want to be or not, and it oxidizes really fast.

Dawn, I am doing just fine - working out like crazy and starting to lose some weight - I was able to get into a favorite pair of jeans that I haven't been able to in at least 1 1/2 years.  Hair is coming in, more slowly than I want (who doesn't want it to all just reappear??) but it will be doable for the ball next week - I'm getting a special post-chemo new hair coloring by Joseph Mullen while I'm in NYC next week -he insists on doing it before the ball, which is really cool.  He's working on a whole treatment / coloring instructions for stylists when working with their post-chemo ladies because color doesn't take to the clear / gray hair very well and comes out muddy.  Very busy at work, which is great - I function best on all cylinders and like to have crazy deadlines.  Next follow up is with my new med onc who I had an initial appt with last month.  Love her!  specializes in breast cancer - don't know why I didn't listen to my brother and see her first.  Oh well - at least I have her now!  Started super low doses of tamox, so far, doing okay without any major and very little minor se's, so we might have actually found something that works!!

Dawn . . . where are your photos???????  How is your hair coming?

I hope all of my April sisters are feeling better - out of the fog and crap and starting to really feel like themselves again!!  It has been a very rough road we've traveled, but we are tough, strong and beautiful!!