Nov 3, 2018 09:26AM Bec-Ky wrote:
I've never had acupuncture... How did it go, did it help? And If so, when do you know if it helped?
Regimens, side effects, and support from others going through chemo.
Posted on: Feb 23, 2018 06:30PM
Hi Ladies. First post and I've already created a new topic - been learning a tremendous amount from this site since the day after my diagnosis. I have looked at so many sites and resources and have to say this community is so inspiring and supportive - thank you all!
4 weeks post-mastectomy and reconstruction today, and I am starting chemo on March 1st. Been reading the topics for January and February starters, and so much has been helpful. Just wanted to open this up for discussion. Scared and apprehensive, but also eager to get "phase 2" underway.
Posts 1291 - 1320 (1,350 total)
Nov 3, 2018 09:26AM Bec-Ky wrote:
I've never had acupuncture... How did it go, did it help? And If so, when do you know if it helped?
Nov 3, 2018 12:13PM hapa wrote:
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.
Nov 4, 2018 01:38AM mLghtn wrote:
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...
Nov 4, 2018 03:52PM Becca953 wrote:
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.
Nov 5, 2018 07:36AM Ingerp wrote:
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. :-( )
Nov 5, 2018 10:15AM Becca953 wrote:
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!!
Nov 5, 2018 02:51PM Wildcolonialgirl wrote:
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.
Nov 6, 2018 10:19PM Bec-Ky wrote:
Well, here go my eyalashes.... Ugh.
Nov 7, 2018 05:25AM Ingerp wrote:
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!
Nov 7, 2018 09:14AM Sidalee wrote:
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!
Nov 7, 2018 10:26AM Ingerp wrote:
Awwww—Sidalee how sweet!! Sorry about the lashes but boy do you have something to look forward to!
Nov 7, 2018 12:44PM Downdoggie wrote:
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
Nov 7, 2018 07:29PM Bec-Ky wrote:
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.
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
Nov 8, 2018 06:53AM Ingerp wrote:
Just re: the tightness, I keep thinking a little bit of yoga might help. I mean every single down dog really opens up the armpit area. (One rads session the tech said, "You have great shoulder mobility!" Weird thing to get complimented on but I'll take it. . .)
Nov 8, 2018 02:09PM mLghtn wrote:
Becky--I have all kinds of body aches basically all the time since the chemo. They are saying its myalgia from the taxanes. Its worst in my lower back and legs (biggest muscle groups), I get relief from acupuncture and keeping up with my yoga stretches (along with meds of course). I have been doing yoga and acupuncture for years for pain (mostly in my neck prechemo) and the issues I have now are much worse. I have also been told you I could have tightness and edema in area that is radiated for long time afterwards and its super important to stretch and move my RO said the best exercise in addition to yoga stretches is swimming (freestyle). They told me to hang in there give myself at least a year to get back to "normal" before freaking out. I totally get it, super f**k*ng annoyed with everything myself, --- and not even done with rads yet!
Nov 8, 2018 02:26PM mLghtn wrote:
Sidalee-- I am so happy for you, you are done with rads and are getting a puppy! Moving forward to happy events! So funny because I was browsing at puppies online (for fun)with my daughter, and then ended up bringing one home a few days later, totally and unusually impulsive of me! I always wanted a standard poodle but felt guilty buying purebred --almost all our dogs have been rescues. Happened to find our dream dog and he was ready to go to new home and we were lucky cause he was the last male. I just figured after what I've been through this year, what the heck--no deprivation --just needed this fur baby for personal therapy
Nov 8, 2018 03:03PM Sidalee wrote:
Aww, thanks MLghtn, I feel slightly less crazy hearing that you did it too! Puppies are awesome! I hope the remainder of your rads treatments are over quickly and recovery is easy.
Bec-ky, sorry to hear that you are having so much pain still. Other than my super tight chest because of my expanders and a sore rib on the radiated side, I can't really complain about how I feel. I'm just tired of course, always tired. I managed to increase the length of my morning walk by about 10 minutes today so I'm counting the win. I am 19 weeks PFC today...hard to believe it's already been that long.
Nov 8, 2018 09:11PM hapa wrote:
We got a dog about a week PFC. Not a puppy though, we got a seven year old Lab rescue that had been a breeder dog at a puppy mill. He's super sweet, but was kept outside most of his life, in the middle of the Arizona desert no less, and so adapting to city life as a house pet has been a challenge for him. And for us. Mostly because he won't pee in the yard, so we have to walk him four times a day. He seems to have fewer qualms about peeing in the living room. Eh, we're working on it.
I love how his tail is blurry in all his pictures because he wags every time I get near him.
The entire camera roll on my phone these days is just pictures of my hair (or lack thereof), pictures of my tits, and pictures of my dog. If I go back far enough there's a picture of a rash I got during chemo, but otherwise...hair, dog, dog, hair, hair, tits tits, hair, hair, hair, hair, tits, tits, hair, hair, dog, dog, dog, tits, tits, hair, dog, hair, tits...for months.
Nov 9, 2018 06:26AM Ingerp wrote:
I am loving the puppen pics!! And hapa—I’m with you except for the hooter pics. ;-)
Nov 9, 2018 07:39AM Rwns wrote:
Hair, hair, tits, dog...😂 cracked me up! Thanks for the laugh Hapa! Beautiful dog!
Nov 9, 2018 09:38AM Sidalee wrote:
Happy Friday Ladies!
hapa, I love that you rescued that sweet boy and gave him a great home, he's so cute! Your camera roll sounds hilarious, mine is similar except I delete the foobs pictures after I take them. I really can't imagine anyone besides by doctors and husband seeing my rock hard, half-burned foobies with the 3 inch scars where my nipples used to be. How are you doing with the radiation? I've been thinking about you, I hope it's going by as quickly as possible.
Hugs and prayers and good thoughts to all of you, hope you have a great weekend :)
Nov 9, 2018 02:45PM Bec-Ky wrote:
Omg.... Hapa! 😂😂😂😂😂
Nov 10, 2018 12:18AM - edited Nov 10, 2018 12:21AM by Becca953
Hapa - He looks so happy that you saved him! Unconditional love. I am sure he will bring you joy.
Quick update...here I sit in reconstruction limbo, still have my expander and several alternatives for recon but no clear winner and no clear decision. I only had a uni but am wondering if I should have bi. If so, then I have to go the implant route. My new plastic surgeon (first one went on extended maternity leave) could do DIEP. Problem is I only have enough extra in the abdomen for one. One foob created from my own tissue. So options are go bi with implants, stay uni with DIEP - a more involved surgery (bonus here is a tummy tuck of sorts), or just have a simple implant exchange for my uni, quick and easy. Also, under or over with the implants. The TE is under now, but I have some distortion and shoulder problems. There is no clear winner. Sadly, my cancer was not clear cut from the beginning. In the original surgery we could have saved more, but we did not know this until AFTER the breast was sliced and diced by pathology. I am trying to avoid a repeat of regrets this go round. Decisions, decisions.
Nov 10, 2018 09:33PM mLghtn wrote:
Hapa- he is very handsome lab, that is so awesome that you rescued a 7 yr old dog, it’s like he won the lottery for dogs! We also have a 3yr old pit mix (chocolate) she is a rescue too.Your comments about camera roll made me laugh🤣
Becca- Those are tough decisions. I had lx but was considering unimx to avoid rads and the surgical options were overwhelming. I was told very difficult to match implant recon to real breast. If u can have the diep I’ve heard people say they are very happy with it feeling and looking like their original breast.
In the end I was told I was very high risk for complications since I already had reconstruction. Also I have very thin upper body and thin skin so they said I would need lat dorsi flap for it to even look decent. At the time I wished I could’ve had the diep. It’s hard, I went through a phase where I wished I had known more about rads and that I would have anxiety about keeping my breast and wished I had mx to begin with. Now I've finally accepted my course with rads and am pretty happy with my decisions. There never seem to be any great choices with this disease. Wishing you well
Nov 11, 2018 02:58PM - edited Nov 11, 2018 03:11PM by Downdoggie
There is nothing easy about this journey. It is good to read your thoughts, symptoms and laugh with you all. What's with cancer and dogs? I've been thinking of getting one too! But I've raised my kids and don't want to give up the freedom of being gone for hours at a time or making last minute weekend plans. So far freedom is winning, but I enjoy your doggie pics
Nov 11, 2018 03:09PM - edited Nov 11, 2018 03:09PM by hapa
We just make our last minute plans include our dog. A lot of hotels nowadays allow dogs, and ditto for restaurant patios (though I guess this is less of an option in the colder parts of the country) so we just bring him along. We haven't taken him camping yet but I bet he'd love sleeping in a tent with his humans. For trips where we can't take him my mom will come to dog sit. She's coming next week when my husband comes to visit me in Houston. She lives in DC and we live in Phoenix, but as a family we've always been ridiculous about our dogs.
Nov 12, 2018 12:16PM Sidalee wrote:
We're the same way with our dog, she pretty much goes where we go. She's pretty well-behaved and we just frequent dog-friendly hotels and restaurants with patios. She's part of the family and I'm sure her little sister will be too :)
I peeled the Mepitel Film off of my radiated side on Saturday--a week after the end of rads. My very top layer of skin has flaked off now, but other than a little itching, I am very pleased with the condition of my skin. Unfortunately, it is pretty obvious that I have had some tightening over my expander--the radiated side is smaller, tighter and a little higher than the right. I'm going to see my PS on Wednesday to survey the damage and see if he thinks we need to look at other options or if we can proceed with the plan to exchange for implants in the spring. I am definitely a little lopsided at the moment :(
Nov 15, 2018 09:48AM 2002chickadee wrote:
Becca - I had a uni MX and simultaneous DIEP in February, there are good threads if you want to read more about other people's experiences (I've posted to the Feb 2018 one). Overall I'm happy with it. I agree it's best to shut off all regrets. This process is so complicated, all we can do is make the best possible decision in the moment based on the knowledge we have at the time, there's no way to control the future completely when you have cancer. (Can you tell I've been telling myself this story? ;)
mLghtn - thank you for sharing your story about acupuncture and your rotator cuff. I was diagnosed with tendonitis in my shoulder 15 years ago, did PT, and largely forgot about it unless it flared up, usually from too much yoga (down dog, sadly), then I stopped doing whatever it was for a while and it went away. Before diagnosis I was quite regular with weight lifting. Between stress, two surgeries, chemo, and now I'm 7/30 radiation treatments, my shoulder pain was so bad it was all I could think about. Got an injection from the pain mgt doc before starting radiation which helped but didn't make it go away completely, and he said I need to do PT after radiation, which I'm on board with. I also still have nerve pain in my arm from surgery, which is controlled mostly but not always by Lyrica. I'd love to hear more about any acupuncture advice! I'm thinking I may do that too to address my shoulder pain and also the joint and body aches I'm getting from hormone therapy (Lupron so far, AI to come soon). Thank you!
Nov 15, 2018 11:19PM - edited Nov 15, 2018 11:22PM by Giveityourall
I have to applaud your response and posted puppy picture. Your comments made me laugh out loud. So, I thank you for spreading lots of laughter and cheer. Awesome !! Very much appreciated.
Nov 18, 2018 01:34AM YangSainst wrote:
Been a while.. I finished Rad's October 18 taking tamoxifen now. Just want to ask questions thats it give you hot flashes? Coz been days now that i feel like I'm burning i thought i have fever but thermometer says Nothing. I used Novadex but after taking 20 pcs it was not available at the pharmacy they have another brand thats when this burning feeling came.. I'm 34 is this going to make me menopause early??