Starting Chemotherapy March 2018
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Downdoggie. I am also in Herceptin suspension mode, for the second time. I had a MUGA (my third since March) a few days before the scheduled Herceptin but it showed decreased flow, borderline I was told, so I am waiting and will have a MUGA in a couple of weeks and hope to resume. So far I have had seven Herceptin infusions. I get scans or echoes about every six weeks. So together we can send our hearts good flow vibes.
Napa. I just finished radiation yesterday. The MO and techs were fabulous. Much easier than chemo.
I am jealous of all your hair. I am 8 weeks post chemo and just have a bunch of fuzz
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Downdoggie and Jstarling - Sorry you are both in suspension and facing the "no good choices situation" that comes up so often during this long tx journey. Hopefully your next MUGAs will be encouraging, sending healing heart vibes...
hapa - great to hear the RO at MD Anderson was so informative and positive. I think trust in the doctor, knowing they have good outcomes, and that with their tx benefits far out way the risks is significant. And I agree with others, peace of mind goes a long way towards long term outcome. Short term move doesn't seem ridiculous at all.
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Hi everyone! Hope everyone is doing well!
Does anyone have any later in side effects from chemo? I have like... random tooth sensitivity at times. Not sure if it's from chemo or tamoxifen... But it's not bothersome too much yet... Hope it stays that way!
Hope all is well! 😁
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Bec-Ky - the only lingering effect I have right now is neuropathy and I'm going to get some accupuncture for that in a few weeks. You may have lost some tooth enamel due to dry mouth during chemo, or have some tooth decay due to it. You should see your dentist. I've never heard of tooth sensitivity due to chemo.
Today is my first day back at work without a cap or bandana over my head. My hair is a total mess, but it's at least (mostly) covering my scalp now. Luckily I'm an engineer and I doubt any of my engineer coworkers will even notice.
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hapa--that's how I felt about being with a bunch of actuaries this week. ;-) Congrats on going topless--hope it isn't too cold where you are!
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Becky-sorry about the tooth pain, and I hate xrays, but probably should get that checked. My most annoying lingering SE is occasional scalp pain tingling, shedding. I’m 4 months PFC
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I also had some redness over the last month or longer and slight swelling of my right breast. And when I went to see my onc for my 6 mo follow up ( few weeks early) the redness was fine but there was slight swelling. They think it could have been delayed radiation effects or something... Which has some edema.
Just in case, he prescribed an antibiotic for a week... Which I'll finish Sat morning (so another day and a half) but the swelling in the breast has not changed. It's very minimal and not getting worse... So who knows.
Just keep on keeping on!
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Hi Ladies, Happy Friday, any fun Fall plans for the weekend?
I'm not sure about late chemo effects, but I do have a few strange things going on at the moment. Today is my #15 of 25 radiation tx and those SE's are just starting to show up. I'm super exhausted, my armpit is stinging and peeling a little, etc. Really looking forward to my weekend break. Probably unrelated to radiation, I have some sort of dandruff-like flaking going on (gross, sorry) and not just on my head--it's all around my ears and on my eyelids. I've washed the works with Selsun Blue a couple of times and it seems to help with the itching, but I'm still dry and flakey.
On a positive, albeit temporary note, it appears my ovaries have not abandoned me as of yet and since I don't start hormone suppression for a couple more weeks I am enjoying the fact that things are feeling and working normally in that area...ahem. Seize the day!
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I have finally achieved full scalp coverage. I think I'm about 15 weeks PFC for anyone who is counting.
I've also noticed ridges growing out on my fingernails. They're like tree rings. There's one for every round of chemo, but I think I've cut two or three off already. Still have some neuropathy, still mostly in my feet.
Jstarling - I hope the heart function goes back up and holds so you can continue on Herceptin. Remember that a recent study showed six months of Herceptin to be just as good as a year, which would be 9 infusions if I'm doing the math correctly. And you're almost there!
Ingerp - did you get enough hair back in time for your trip?
Sid - I'm on #3 of 30 today for rads. Not too excited about it. There's a spot on my chest/armpit (right at the edge) that already itches, which worries me.
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Hapa, congrats on the hair regrowth!
I'm sure you and Sidalee have heard, but cornstarch baby powder on a very soft brush, after you put on whatever cream you're using post-rads daily, helps (or at least helped me) with the itching and kept the area drier.
I have never grown the armpit hair back on that side, but for the first time this past weekend noted that despite no hair regrowth, it's time to start using real deodorant again. Oh well...
And my toenails are finally growing back to normal, after one last round of the top part literally cracking off. But it's closed to season here in New England so that's easy to cover up.
I'm 8 weeks into Arimidex/Anastrazole, so far so good, with minor hot flashes, nothing like the real thing.
Wishing all a great weekend!
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Happy to report that I had a good Echocardiogram and had dose 8 of Herceptin! No real side effects left from radiation but it still feels good to slather on the Calundra cream.
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Hi All,
When ever I have to go back to the chemo clinic (now every few weeks), I turn into an emotional mush ball of tears. Not a fan. I just want to be done and get to a new normal. Friends say it is PTSD, but I'm not post - I am still in it, hopefully just not the worst any more.
Jstarling, good to hear that you are back on track. I also had improved results with my last MUGA and have now had 2 doses, and a repeat test next week. Fingers crossed that we can both stay with the treatment plan without further heart damage.
Wildcolonial, isn't weird how the Arimidex hot flashes are like mini-flashes? Thank goodness they don't last for long. Yeah, I have been back on deodorant for awhile, even though I have only one tiny, weird patch of hair on the pit that got radiation. I am trying a new crystal roll on that is less toxic and seems to keep the funk away.
Bec-Ky, I hope your swelling is gone, along with the weird little side effects. I have random stuff too. My vision changes daily, and it is quite annoying. I carry around old and new glasses in my purse now.
Hapa, funny how your nails are like tree trunks. Mine also have ridges and the thumbs have black lines. The rest have white presents but they are growing out and I am cutting them frequently.
Sidalee, I think I had lots of flaking during radiation too, but just on my head. I hope you can get lots of rest. The radiation exhaustion kicked my behind because it snuck up on me and I didn't rest enough - then got slammed hard.
Be well!
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My swelling is not gone and I need to see a physical therapist for ways to do lymphatic massage to the breast...
It's like breast lymphedema possibly.
It's not terrible but it's noticeable. And I hate touching my boob... Especially that one cuz there's a level of numbness that is just so.. Ugh.. I just hate to touch it.... 😂
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Becky-I’ll be interested in what happens with your swelling, as I am having same thing. Slight swelling and some tenderness. I’m a little over 4 months PFC, and this just started. 😝 I can live with it, just hope it’s not a big deal. Did your MO say it is due to radiation or surgery?
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Hi Girls,
This is my last week of radiation, I am so glad this has gone relatively quickly. My skin is still holding up admirably so far, I am only a little itchy in the areas that the Mepitel Film doesn't cover--mostly the little groove in my armpit where they took out my SNs. I'm still really tired and I'm having trouble swallowing any dry foods like bread so I'm sticking to eggs and pasta, etc. for now. I'm nervous about what this next week or two might bring, but hopefully it won't get any worse. I also have HP infusion 6/13 tomorrow and my echo a couple of weeks ago was okay.
Downdoggie, I hear you on the trauma, I have to talk myself out of a panic attack every time I hear the radiation machine kick on. I hate it so much. All of my coworkers are very sweet and supportive, but I'm tired of hearing "It's almost over!" when I know the immediate side effects will likely get worse and no one knows what the long-term blowback might be.
Bec-ky, I'm sorry to hear about the swelling, please keep us posted. Those unknown late effects sure keep me up at night.
I'm supposed to be working, but I've spent most of the morning online looking for outfits for my girls for Holiday pictures, lol. I love a good distraction!
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hapa—thanks for asking. This is me yesterday—I was 12 weeks PFC on Friday.
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I had my first (of 8) round of acupuncture today, to try to get rid of my remaining neuropathy and hot flashes. It was weird.
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I've never had acupuncture... How did it go, did it help? And If so, when do you know if it helped?
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I haven't noticed any difference yet. The integrative medicine doctor said that if I didn't feel a difference after 8 rounds that means it doesn't work for me. The acupuncturist said that once my neuropathy and hot flashes are gone, I don't need to continue with acupunture - once it's gone it's gone, and it may not take 8 rounds. But the gist of it was this:
I laid on a table face up and pulled my jeans up to my knees, shoes and socks off. He put some needles in my leg below the knee, in my ankles, feet, and big toe. I think he twisted them on the way in. He put some more in my hands between the thumb and forefinger, and one other but I can't remember where. One of the thumb ones hurt so he pulled it out and put in another one, which didn't hurt. Then he put three or four into my right ear. He hooked up the below the knee and big toe needles to a little control unit and started putting electrical current through them until I felt some buzzing, but not enough buzzing to make me feel uncomfortable. He said is should feel weird. It definitely felt weird. Then the machine started going through a routine of buzzing and pulsing, and he turned out the lights and left the room. Some of the buzzes made my muscles tense, such that I had a little involuntary kick. I laid on the table like that for maybe 10 minutes. It was not painful but also not pleasant. At some point one of the needles fell out of my ear. Then he came back in, pulled the needles out, and I was on my merry way. Cost: $75.
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I've had great experience with acupuncture. I had a really bad rotator cuff injury a few years ago and could not lift/move my left arm. My orthopedist thought I might need sx so he refused to give me any cortisone injections until they had MRI done(that took a week). In the meantime I had acupuncture 2x/week. my acupuncturist also hooked the needles up to the tens unit for the electrical stim which relaxed all the muscles in that arm. By the time my orthopedist saw me again and wanted to do injection it was so much better that I refused the steroid injection and opted for PT only. Doc did not think I could handle the PT without the injection, but I continued with the acupuncture and PT and recovered no problem. I have been getting tx for years regularly. Also throughout chemo and afterwards, all my neuropathy went away. My biggest problem now is pretty severe myalgia anytime I increase or do new activities, its actually pretty debilitating. I feel so stiff, tight and achy some days that I can't do anything without taking medication first thing in the morning. I don't think its arthritis since I never had these issues before and they tried me on celebrex and it didn't really make a difference. The acupuncture helps and I'm getting better slowly, but as I increase activity level again it returns. I guess maybe the muscles are still not able to recover normally from the effects of chemo? It started during the taxol (I had to stop exercising during the taxanes as I could during AC due to severe myalgia) . At this point there is no way I could go back to work and do a 12 hr shift like I did before--kind of depresses me many days...
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Good to hear from everyone. I have not been on in some time. Kids are keeping me busy along with all the medical follow-ups. It is like a job itself.
As for late chemo effects - I have now lost my eyelashes for a second time PFC. They were nice and thick, then whammo -fell out again and are now sparse. First time was one month PFC and the eyebrows went too (I kept them during chemo but not so after.) So, I am 20 weeks PFC and sporting a few, so far so good with eyebrows this go round. Apparently, this is not unusual, but also not super common. It's like a bad science experiment.
I also had some latent effects with being super tired in the afternoon. MO said this is a common latent PFC side effect. It was bizarre. I would be driving kids somewhere and just suddenly be wiped out, and have to pull into a parking lot for a five minute nap. I felt odd, but it was necessary.
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Becca--I've read about a lot of women with several rounds of losing eyelashes. The explanation I've heard is that rather than the normal (pre-chemo) pattern of losing a few every now and then, the chemo resets it so all of the lashes are on the same cycle (so all fall out at the same time). But it will get back to normal eventually--hopefully this is your last one! (Mine are still growing in from the first time around--plenty of lashes there but not super long yet--I'm 13.5 weeks PFC. I really really hope once they're fully back they don't all fall out again. :-( )
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Ingerp - thank you for helping me understand. I am just so over this whole effort, but then I think about the alternative and get a jolt back to reality. Fingers crossed for you that yours stay put!!
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Hi ladies, I am 26 weeks PFC and my lashes seem to have stabilized. I had a decent amount in August and then another "cycle" where they thinned a lot and then started to come back.. Certainly not full yet but enough to get some mascara on. Still lining inside the eyelid to hel with the illusion of lash line. Hopefully this is it for me as well.
Also saw the last of my chemo toenails finally grow out. I had a pedi this past weekend and the big toes had cracked a ways down (boot season here already), but she was able to trim them back and now they look pretty healthy from the nail bed up.
Hair is chemo curl crazy. I am letting the top grow in to create kind of a pompadour and getting the sides and back cut really short. Very androgynous look for me but i really looked like a middle aged Annie otherwise. Using shea butter and argan oil to keep it down.
Always something next it seems. Still adjusting to the Anastrozole. I have follow ups with the onc docs starting next week.
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Well, here go my eyalashes.... Ugh.
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Ugh, Bec-Ky. Maybe they won’t all go? When mine were on the way out there was a spiky period where I only had some left and with mascara it actually looked kind of cool!
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What is this nonsense about losing eyelashes again??? Mine still aren't all the way back in yet! Eyebrows just got back to semi-normal too, I sure hope they don't fall out again
. My nails are still a cracking, peeling mess.I finished rads last Friday, I'm so glad. Still turning red especially around my collarbone, but I'm already feeling better. I'm still pretty tired, but I think a lot of my troubles with this were psychosomatic. It's like the dark cloud of the past six weeks has suddenly lifted.
Holy impulsiveness...I decided to buy my husband another English Bulldog for Christmas. He's been wanting a black one and we love our 4yo EBD so much so when I saw this little girl I decided we needed a new challenge lol. She comes home on 12/21!
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Awwww—Sidalee how sweet!! Sorry about the lashes but boy do you have something to look forward to!
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Hey Ladies,
It's comforting to hear about your lash adventures. My lashes are also thinning again and half my brows are gone. They all came back so nicely a couple months ago, Thanks for the reminder about why, as I was thinking it was due to the maintenance drugs.
I have limited mobility and pain in the arm on the surgery side when I try to reach up, over or behind.. I'm wondering if it's scar tissue forming because I didn't have it until recently. Any ideas
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I have the tightness in my armpit area and depending on how I stretch it extends down into my breast areas too. Pt encouraged regular stretching.
I also have breast lymphedema.... Not in the arm but just the breast. Super f*cki*NG annoying. It's not bad but it's bad enough where I'm irritated by it. Like.... Ugh. I only had 4 lymph nodes removed so WTH.
My back hurts all the time and what my chiro was normally able to fix in one easy session and I'd be good forever, is not working at all. Sometimes I'm convinced I have bone cancer but then I get over those thoughts.
My boob also hurts a little bit and sometimes it feels like it's the breast bone that aches.
Whatever.
And yeah every morning I wake up with a couple lashes on my face..... But I remember how fast they came back and it's not as nerve wracking... Maybe I won't lose every single one.... Lol
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