Starting Chemo September 2015; join us!
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I am currently on # 21 radiation, I have 12 more with 5 of those being boosts. I am now extremely red with a rash just on my upper chest and neck. Doctor said nothing to worry about.
El tigre, Great picture of you and your husband. Hope you guys had a great time.
twiggyor Your hair looks great.
I had not gone w/o wig at all until I started radiation. I lay on stomach with face down during rads and I felt like I couldn't breath and when I got up the wig was all side ways and sticking up!!! So after that, I just stop wearing it to app'ts. I go to work everyday after radiation, so I would put the wig on b4 I got to work. Last week I went in bathroom to wash my hands and my gray hair was sticking out of the top of the wig!!! I had to laugh but I have not had the wig back on since that happened... May hair is approx. 1 1/2 on top and a little longer on sides and back, its pretty curly and salt and pepper in color. I ve thought about coloring it but I am so happy to have hair back and scared to dye it!!!
Did any of you guys hair come back curly? In the pics it all looks straight??
Shogal- Your hair is cute looks like you cut it that way??
Hope everyone is doing well
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It's filled in a little more sense this pic 2 weeks ago. I still look like a Q-Tip
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Shopgal - your hair looks Fantastic!! I love it!
I'm going to color mine and post a pic.
Mine looks quite like yours Southern! (except mostly gray right now)
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aww southern it looks really thick. Remember when we were stressing that it wouldn't comeback til Spring? And edwsmom color that grey away. Can't wait to see your pic. Lila your beautiful smile lights up any pics. I also would have kept the grey but I wanted a fresh start being cancer free now and 40 lbs thinner.My grey was my woobie during rads and it was time to let it go. No more hiding behind cancer girl.
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I'm loving everybody's hair pics!
Hit another bump in the road: my left big toenail has looked dead for months; last night the surrounding tissue got sore and red. Since I have no fever, I'm trying warm soaks and some leftover antibiotic cream. Cross finger for me, I don't want to go anywhere near doctors right now
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3 1/2 mos. pfc
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Tessu, your hair looks nice and thick! all of you are doing so well, it is good to see hair again. Here is a shot of mine: the morning light makes it look a bit darker than it is, but I like that because this is the color it was before chemo. Now it is a bit 'mousy' for my taste, but it is hair! and look: a cowlick! I will probably be scheduling a trim soon.
This is just about five months PFC.
Hugs to all!
Octogirl
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My last Chemo was Feb 19th. I am on # 24 radiation. I need to dye it but I am just happy to have hair!!!
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I finished Chemo February 19th and started radiation on March 14th on # 23! Its really gray but I am so happy to have hair not sure I care what color it is!!!!
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nice hair everyone! you'll have to excuse my organized chaos
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Hello lovelies!
So glad everyone is doing good!
Hugs and more hugs
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I still HATE my cancer, but am consciously trying to use it to push me out of my introvert, sit-at-home shell. Possibly due to hearing about my bc, an old acquaintance from agility days invited me to come birdwatching with her and her husband. Both are retired high school biology teachers; he's very much into birds. Even though they live farther away than I've driven in ages (= scary) I went --- and had an utter blast warching migratory geese and swans and ducks and lots of others (? names ?) through binoculars and his super telescope. We even spotted a kind of hawk that is very rare in these parts, so my friend's husband made an official report. He especially was apologizing that there were "only" dozens of birds at each site instead of hundreds; I was GEE WOW THIS IS FANTASTIC! I am so glad I went; have already been invited to their annual wildflower hunt once the rest of the snow is gone
So maybe just maybe I can pull SOMETHING positive out of this h*llish mess: I don't know how much time I've got left, but I want to make it fun0 -
That is so cool Tessu I admire you for trying new things. You are a very wise and strong lady! I am coming up on my one year anniversary of the mammogram that took me down this road. I have come to understand that I will be forever different. My life will be forever different but you are so right in that when we reach out and go to positive experiences it helps to bring us joy and allows us to enjoy the life the best we can. My hair still quite short. Still nothing to style.
Ok love everyone's hair pics. Mine was growing really well until I started Femara now it is slowing down. I have been wearing a lot of baseball hats because its hot here. I thought I would be able to get a cute short cut this week but I think it is going to be another month. I ordered a few more wigs and have been wearing them to public places where I don't want anyone to stare at me and wonder if I chose this hair on purpose. Other times around the people that know about my cancer I just forget about the wig and try to not worry about it. its getting so hot here in Boise that I suspect that I will not be wearing a wig at all as it is just too much trouble.
I love checking in on everyone. My left hand is slightly better but still has tendinitis in my thumb very much like De Quervain syndrome. my right hand is still very numb and tingly similar to Carpal Tunnel. My Mo is sending me to a lymphedema consult to ensure that I do not have pressure on the my nerves. They are trying to be sympathetic but I think they believe that this is a side effect of either Chemo, my surgery, drop in Estrogen or Aromatase therapy....Take your pick. In other words it might get better or it just might suck forever. Its scaring the dickens out of me as I desperately need my hands to work. This is the first week in a long time I can type at all. This post is probably all the typing I can do today. I have not been able to garden, ride my bike, well you name it I have had so many problems with my hands I am not functioning. It has gotten better though. For awhile I thought I might be on disability the pain and problems were so bad. My Breast Surgeons nurse said to give it 4-6 more weeks as my left hand is improving so hopefully my right will as well. For now I am sleeping in hand braces and I wear them a lot to give my hands a break. I am also ordering a new keyboard that is ergonomic.
Right now I feel like I have to remind myself that I will adjust to some of these setbacks and hopefully things will get easier and some of the side effects from BC will become more manageable. I never thought I would post this compared to Chemo but I am pretty discouraged over things right now and I need to push myself out of my comfort zone so that I do not get bogged down and depressed. Sorry for the pity party ladies.
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Tessu & Exercise & Everyone -
I am 11 weeks post chemo and Saturday night I was an ultra-ugly-teary meltdown: I coulda-shoulda started radiation March 23 and was postponed for the 2nd time late last week due to serious continuing post-surgery internal bleed complications.
Exercise, can I be your "plus-one" to the Pity Party? Why-the-frack is this so hard THIS far past chemo? I have come to realize I will never regain my pre-cancer [fill-in-the-blanks] and am struggling to come to terms with who the "new me" might be.
I look forward to meeting her and trust she will be able to do the hard work of cobbling together life with peace and grace. I'm not there - but am holding out hope I will be able to make that journey.
I send love to all of you - thank you so much for sharing your experiences. They are invaluable to me.
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Hi,
So I'm on Tamoxifen for now but how are you lovely ladies handling the AI's? I hear they are worse for joint pain, which I have a touch of right now. Acupuncture & Naturopath are defenitely helping the joint pain
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HI Tigre,
I don't have an answer to your question. I will start Tamoxifen in the next week. Nervous about it....and following the experiences of those who started it before me to see what I should expect....
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Hi Edwsmom, Seems all the meds come with some form of SE.
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Hello my friends! It's so good to see all of you growing beautiful hair! I am sorry for the tough times we are are still having working our way past the challenges on the new path we are on.
For some strange reason I am really liking my Q-Tip hair do! The growth has really slowed down I think because of the every 3 week Herceptin infusion. I finished radiation last week at 30 treatments. I ended up with a very bad and painful burn on my chest. My RO said it was bad where I had previously had sun damage from way too many years at the beach baking in the sun with no sun screen! I really did not expect this to happen but it hurts like crazy! I have a RX for Silverdene cream, and Darvon for pain which I hated to take but did because it was so bad. I'm on a healing path now thank goodness.
Exercise I too have the numbness in my fingers and left hand. My feet and toes are a little better but by evening they still bother me. I was very good about taking supplements like B 6, 100 and 12 as well as others. I sorta slacked off during radiation and now I think that may be related to the neuropathy getting wore again. I am now being religious about my B supplements especially.
MN Lisa I can't believe you are still delayed with your Rads! What a bummer. I know you just want to check this one off the list too.
Tessu bird watching sounds fascinating and relaxing, good for you!
Love to all of you, here's to discovering our new norm and embracing it!
Latest hair growth update
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Lila - I love the "Frosted Pixie" look! Your earlier "going without wig/hat" report inspired me so much. I have some hair (less than yours) and now go everywhere hatless (when its warm enough). Thank you!
Ladies, today I am scheduled to be de-ported!
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Minnisota Lisa YAY! for de-porting!!! How did you celebrate?
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Tessu - Thank you! Nothing special: potato chips + cheap wine
Surgeon also decided to give my lumpectomy incision (which still looks thin and livid) another month's rest before starting radiation. While that's disappointing on one level, it also means a one month vacation from treatment. I'll take it!
Hope everyone's doing as well as possible and continuing to grow fierce, gorgeous hair
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ElTigre- How are you feeling since finishing Radiation?
Iam on #27 and I am extremely burned on my neck and under my boob and around incision were they removed lymph nodes. It looks blue all under my boob??? Been using the creams doctor gave me 3, 4 5 times a day. Just wondering if ANY ONE HAVE recommendations other than the prescribed cream? Also I am wondering if I should be so tired and exhausted! and really stiff .......Also my white blood count is as low now as it was during chemo?
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hi, i'm feeling better
I have joint pain so i saw a naturopath who had me start some supplements and I started acupuncture, one of those has helped it subside some. We are not sure if it's from Rads or my estrogen being blocked or shut down in my body.
My skin healed up within a few weeks after rads. I used calendula cream and coconut oil. I started the coconut oil after rads was done and it really healed it up fast for me. I was irritated in my armpit but the discoloration was only red or tan. Have you had your RO look at the bluish discolorations on your breast? I was told radiation fatigue can be staved off by activity and I found after i went for walks daily or almost daily 5/7 days it helped.
I am also having low wbc. I was below normal, under 3, when they tested my blood soon after rads was done. We are working with the naturopath on that as well. Low WBC can also attribute to be tired or fatigued.
How are you doing TKEMP? Did they say anything about your low wbc, maybe what could have caused it or did you have a neulasta shot on your last chemo treatment? I skipped my last shot of that which might have hurt my wbc counts
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I showed the bluish color to the radiologist and he kind of shook his head and said "yea your skin is starting to break down, but it would have been worse if you were laying on your back"...I am like OK...its not much I can say I guess it has to be done so ..........My neck is also really painful and burned.....
I asked about my white blood count being 2.3 and he just said he wasn't worried about it sometimes chemo stays in your system a while and it takes a while for it to build back up, but my white blood count on last chemo was 3.9 so its actually lower now then when I was taking chemo which of course worries me.....No they did not give me neulasta at all during Taxol. So the last neulasta I got was like Nov 2015. I have 5 more rads and they are boosts directly at the incision site....starting tomorrow. I will try the coconut oil....I would try anything to make it feel better at this point.
I really need to walk/bike or something!!!! I am just so dang tired!!! But if it would help I need to make more of an effort and everything I read says exercise is important as far as recurrence goes.....I REALLY DONT WANT A RECURRENCE.......
I have to drive 2 hours each way for radiation, my daily apt is 830. Then I work from about 10:30 or 11:00 to 5:00 each day and go home fix dinner and normal house hold chores and 2 of my grandchildren are playing t-ball (I cannot miss their games lol) I think I am just totally exhausted!!
naturopath and acupuncture helps? Ill have to look into both of them and find out if either are in my area. Insurance probably does not pay for either?
It is nice to know it gets a little better....
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I forgot to ask. What is everyone using on their hair? Anything in particular? And is anyone taking biotin? My hair was growing pretty fast and its seems like its slowed down during rads....maybe its my imagination....
Also as far as vitamins go, I am still taking Vit D and B12. Wondering what everyone else is taking. I was thinking about taking Prenatal vitamins??
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also aloe vera kept in the fridge helps too. I'd check with your RO or ask on the one of the forums about other creams too. I think there's a cream they prescribe for open areas that the skin has broken down form rads.
I read somewhere the WBC could be affected by rads as well, although it's not common. Don't push yourself too much because your body has already gone through alot. I would check out a naturopath and see what they say. My insurance covers it, not the supplements but we can shop around for the best prices. The supplements that will help bring your wbc back up might also help with the energy levels. Also protein during rads is key, i think someone just mentioned that.
I am taking a list of supplements but some I had to wait to take so they didn't intertffere with rads. I'd check with your MO or RO.
It WILL get better, every day it does!
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Oh, exercise, I can so relate to your discouraged feelings. I'm nearly a month post rads and 3 months (?) or more post chemo. Still tired and achy and skin a bit tender and tight. I keep trying to tell myself it's getting better but I do wish it would get better faster! Fingers and the soles of my feet are a bit weird. I started on Letrozole/Femara almost 2 weeks ago but haven't noticed any SEs so far, other than one time after I read stuff about them. Power of suggestion?
Have a little bit of hair now but not ready to be seen in public without a hat, at least until it gets too hot for a hat. Never did wear a wig all these months. The one they gave me didn't fit well and I didn't want to spend any money for one.
Nice to see people are still posting here. I guess we'll figure out what our new "normal" will be.
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I wanted to pop back in for just a minute. I love to read but I can barely type.
When I had my port wound I was sent to the wound center. There I met the most incredible doctor. My wound kept pitting out and was really serious as it was in my chest wall. He told me to go up over 100 grams of protein a day and use juven if I could. It made a tremendous difference in the healing of my skin. He truly saved my port. I only post this because he has a lot of women come to him for radiation burns and he tells them the same thing. Hope that is helpful.
Hang in there ladies. I got to a hand specialist next week. So far no new side effects with Femara and all of the Arimidex side effects have left except for my blasted hands.
Sending positive thoughts and hugs to everyone.
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Hi Tkemp67
Im not sure how long it takes for our white cells to recover. What I do know is I still feel tired its been about seven weeks since I finished radiation. I think it must be a build up of surgery, chemo and radiation and stress. The fatigue is starting to become quite depressing. My bones and joints ache too and I haven't started my AI yet. My doctor prescribed cream for radiation some sort of cortisone cream. On the plus side my ski recovered quickly after rads was over. Im sure it is the rads that caused stiffness in my back...daily exercise does help.
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