Chemo starting June 2018
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PS is pleased with the results of my latest surgery. He had taken out 200cc’s from the left TE so there would no tension in my skin so it could heal properly. At my last appointment he put 40cc back in and is thinking he will do that again at my appointment this coming week. If all goes well, then he will clear me for radiation.
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I got an email today reminding me that it's time for my annual mammo. I literally laughed out loud. Yeaaahhh I think I'm hyper aware lol.
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Kat22 - I think I would have reacted the same way. It’s good that there are things that can still make us laugh.
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Well... I thought I was almost done, just the rads left, and got a couple of surprises:
- The pathology report from the lumpectomy came back HER2+, which the biopsies had not reflected
- I got back my DNA test results with a ATM variant that precludes radiation
So now I'm scheduled for a BMX without reconstruction in March, to be followed by 8 months of Herceptin.
Blah.
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yellowb- sorry about your journey taking a sharp left turn. Hugs to you
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oh yellowb what a bummer! I’m doing the herceptin and perjeta for a year and it’s not so bad. Nothing like the chemo.
Hi everyone else! how are you all doing? All things considered, im doing pretty good. Feeling stronger everyday and have energy again. Struggling a bit with hot flashes and my eyebrows and eyelashes didn’t really grow back ;( I’ve also been pretty antisocial and my self esteem is shot. The experience has changed me but not necessarily for the worse
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yellowb yes what a bummer! So sorry. I wish you good healing and comfort ahead with the surgery and meds.
I do appreciate hearing how everyone is doing at this point. We all had a lot of trauma in 2018.
I had implant surgery in January. Felt like myself again about 3-4 months after chemo finished. The implant surgery was SO much easier than the bilateral mastectomy with TE's, and healing went really well.
When I look back on all I've been through, it seems horrible and impossible. It was quite horrible, but not impossible. Day by day, side effect by side effect, I got through it all. This site has been a really supportive place to go, share, learn. We all care about each other, and that has been really helpful.
I'm not loving being on the AI. I have aching thumbs, stiff joints, and my fingers fall asleep a lot. None of this is impossible to deal with, but it's also not fun. Must stay on the AI--it brings my recurrence risk down a LOT, so I'm going to hang in there.
lulabella I like your comment about changed, but not necessarily for the worse. I feel the same way. Getting my bearings again about social interaction, self esteem, and dealing with my self-image has felt challenging. As in, I've usually felt capable and strong and able to manage things, but my physical limitations and health issues have lowered all that a few notches. I feel bigger and stronger in a lot of ways, and also more vulnerable and frightened. However, all in all, I'm glad to be here.
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Anyone else have numb hands that started 2-3 months after chemo ended?
I just had an appt. with my MO to see how I'm doing after 3+ months on Anastrozole. When I mentioned numb fingers, hands that feel like they're asleep, neuropathy, etc. he said that this sounds NOT like an AI side effect, but a Delayed Chemo side effect, especially to Taxane.
My last chemo infusion was early September. This numb hands feeling started in November, 2-3 months after PFC, and it's been with me now for three months. He said that it sometimes lasts 6 months. If it's true that it's a delayed chemo side effect, that's actually GOOD news, because maybe it won't be with me for all the years (5-10) that I have to take an AI.
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@lulabella, thanks for letting me know! And I'm sorry you've been subject to ravaged self-esteem. This stuff is so tough, and it's so strange to have to actually work at feeling like your body is your own.
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I just had my 6 week post rads check up and Herceptin #10 yesterday. My heart was stable at my last echo instead of function going down, so fingers crossed. Will be doing Zometa infusions starting in April to help prevent bone mets. Started Letrozole 4 weeks ago. Achy hips and shoulders so far. Neuropathy is better in my fingers about 90% and toes/feet about 80% 3 months post Taxol. Fingernails mostly grown in, but now big toenails are starting to lift ??? 3 months later, really. Hair growing, eyelashes and half eyebrows - hope the rest grows in. I guess our bodies are busy regenerating. Probably why we are still so tired.
Joined the fitness centre from our city. Hoping as well as feeling stronger it will help me feel like I have some control over my body.
It was March 12 last year when I called my family doc about the lump under my arm. Hard to believe it has been almost a year and while done the biggies of chemo, surgery and rads I'm tired of it all and really not finished. Anyone else have family, etc. that expect it to all be better now??? Wondering why you're not done treatment yet???
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bgirl:
A few of us have had big toe nail problems. There is a thread on it. I’m 4 months PFC and am dealing with a big toe nail issue
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Great to see some of you (us) popping back in with updates! This process really has changed us all, I'd say. I feel like I have this new sense of what's important, and don't let stuff get to me as much.
I have 2 rads left yeah! Had a couple weeks interruption; first my RO wanted me to take a break for a few days for skin to heal. He went ahead and did my 5 boosts which left me with 3 regular treatments to go. Wellllll....he put on a 5" square colloidal patch to help with healing, I developed a nasty rash in response. But I didn't know it until he took it off a week later. Turns out the itching wasn't due to healing as I thought, but because of the rash. He gave me cortisone cream which really helped it heal up quick and today I did the first of the last 3 treatments. I'll be done on Friday.
My treatment center doesn't have a bell to ring in the infusion area. But they do have one in the radiation area, and I'll be ringing the hell out of it in two little days!!
Otherwise I'm good, still having some neuropathy in my fingertips. Hoping that goes away at some point. Also having intermittent problems with balance...wondering if that may be neuropathy in my feet? Will discuss w/MO next week when I go for HP infusion. 4 more of those to go after this one. Plan is to start me on Letrozole, so I'm really interested in any stories from anyone who's also taking it. Hoping for minimal SEs of course.
We've all been through so much....but we're still here!
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My update is that two months PFC I developed hand neuropathy. My oncologist recommends quite a list of things to try: B-Vitamin complex, Alpha Lipoic acid, Glutamine and a few other things. Try one thing at a time, and see how it goes. I have numb fingertips, and my hands fall asleep a lot. Ugh. I did have some foot numbness during chemo, but not hands, so this is a new thing. Not loving it, but I'll try the supplements and see how it goes. I ceremoniously threw them all out at the end of chemo, which was not very smart, since they're kind of expensive. Ugh again!
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Well, I got lymphedema a few weeks after radiation ended and now am struggling with radiation induced pneumonitis. Lymphedema is very slowly getting better. Taking massive amounts of steroids for pneumonitis. I just want to feel healthy again...
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What symptoms do you have from pneumonitis?
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Diana1234 I don't know if my symptoms were like InnaB2018's but I also had pneumonitis. I didn't have radiation in 2018, but mine was a 'post chemo reaction.' It started about 2 weeks PFC and lasted for about 3 months. I had difficulty breathing, couldn't take a deep breath, got extremely winded climbing a flight of stairs. It didn't have me bed-bound, but it restricted my energy and my stamina a lot.
On a chest x-ray, it was seen that the bottom half of both lungs was inflamed, so it was 'lung effusion.' I was put on a high dose of dexamethasone for about 8 weeks including a very slow tapering off. My breathing finally felt okay 4 -5 months PFC. I've had pneumonia twice, earlier in life. Pneumonitis felt the same way, as far as struggling to breathe well, except I also felt sick when I had pneumonia.
That two months of steroids made me gain 10# that I can't lose. But, breathing is crucial, and of course I really did have to be on steroids, and it worked to turn things around. Ha ha, obviously, if I had any will power, I could probably lose the weight, but no.... I still feel like a trauma victim, and quite self-indulgent, so it's hard to eat in a way that will take off those 10 pounds....
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Thank you!
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Mine were sneaky. I am totally ok during the day, maybe slight dry cough from time to time, but no biggie. I am not winded, no chest pains. But the moment I lay down, I start coughing to the point of crying. Waking up everybody. Had to move back to my recliner, since sleeping in a half-seated position alleviates the cough. Had a CAT scan done, which showed inflammation. Now I am on Prednisone.
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Anyone else dealing with neuropathy? My MO says that mine is definitely a post-chemo 'reaction,' which might go away in a year or 5 or never. A known thing that happens after chemotherapy including any of the Taxanes (Taxol, Taxotere, etc.) Final infusion was September 4, 2018. My neuropathy started in January.
Hands fall asleep, fingertips numb, some neuropathy in feet, but it's mild there--just some tingling. I have no pain; my neuropathy is numbness and loss of sensation in hands and fingertips. Comes and goes sporadically, and maybe 25% of the time my hands are not 'asleep.' MO says that it can start 'any time' in the first year or so after chemo ends. Oh, I happen to be a classical pianist as a hobby, and I play chamber music regularly, so this new thing in my fingers is very horrible.
I'm now on daily B-complex, Vitamin D (2500 units), Alpha Lipoic Acid, L-glutamine. I think that the theory is that the absorption of these (mostly amino acids) are interrupted by chemo, so we need extra amounts.
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HikingLady, try acupuncture! It really helped me with neuropathy and hand-foot syndrome.
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I have very little neuropathy left from chemo (10/8 was my last infusion). My right index fingertip doesn’t feel quite right and the balls of my left foot get numb from time to time.
After lots of troubles with my left TE and skin issues, I will finally have my radiation planning on 3/25. Any tips on how to get through it all? 33 rads total.
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RosieRed I PM'ed you with a few tips. Expect to need a lot of rest, so try to plan for that by the third or fourth week. I hope your neuropathy resolves and you can manage this last hurdle and all goes well. Warm wishes.
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My PS put in the last fill for my left TE. He teased and asked if I wanted fireworks or confetti for the occasion. So I’m officially cleared for radiation.
My DH had surgery today and while I was in the waiting area I heard someone checking in to get the sentinel node procedure. Made me sad that one more woman is going to go through breast cancer surgery.
Hope all of you are doing well.
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I wish there were no newcomers on this forum. I try to respond at least once a week to one, letting them know we are there for them and try to answer those impossible questions that only they can answer.
The anniversaries are starting....Diagnosis March 15, Double mastectomy April 22....I came across an email at work from a year ago scheduling leave that made me cry. I remember being so scared of the unknown. I cried myself to sleep for weeks. I'm glad 2018 is in the past. If or when the other shoe falls I'll cross that bridge then but for now I plan to garden, do art, succeed at work and try to stay healthy. My only health challenge at this point is that I'm gaining weight either because of Tamoxifen or from residual chemo - so I'm back to counting calories and trying to at least not get heavier. This next week I'm getting a final touch up from my PS. He's doing a in-office nip and tuck on a 'dog ear' that bulges up over my bra a little behind my arm. I read back on this and am still uncomfortable with how vain I sound but then give myself a break - I've been bald and have had my breasts cut off this last year.
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rachelcarter35- You are not sounding vain. After all you’ve been through, you deserve to look the best you can. It’s the least life can give to you since cancer stole most of 2018 from you.
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rachelcarter35 I'm with you. 2018 was a year of huge trauma. We go forward with scars, inside and out. Glad you're having the foob revision that will make it better for you.
2018 is a year I just want to ERASE. I also had a very huge foot surgery right before breast cancer, so the year was chock-full of challenges. Ahem. "Challenges" : a euphemism for saltier language which I really want to use. Insert your own favorite, more colorful terms here. Remember, I'm the one who really, honestly, thought that PFC stood for Post F****ing Chemo, not Post Final Chemo. I just assumed that everyone thought about it the way I did, lol.
My new foobs are Okay. Can't be very big because I had radiation in 2013, and scarring made the tissue on that side not stretch much. Oh well.
I've probably gained 8 pounds since chemo ended in September. Partly because I had to be on steroids for lung inflammation (chemo-induced pneumonitis), and perhaps also because of my AI. I feel disappointed to be a bit heavier, because smaller foobs make my proportions be not great. All weight gained lands on stomach and hips, since breasts are no longer there to balance out some of the weight gain. Grrr... I feel forgiving of myself about this. A little chubbier is not good, for future recurrence risk, etc., but considering all I've been through, it's hard to deny myself a few treats, and therein is the weight-loss obstacle. It's going to be an ongoing goal, though, to lose those extra pounds.
Chemo, The Gift That Keeps On Giving, has left me with ongoing peripheral neuropathy in my fingers and hands. I am a classical pianist as one of my hobbies, so this is very annoying. My fingertips are numb, and my hands fall asleep a lot. My MO office is directing me to a slew of supplements which I think are helping a bit. Whether or not they're helpful, at least I have expensive urine now. This issue might resolve, or might not. In a year or five, or never.
Every day I work on that balance between being VERY GRATEFUL to have a shot at being cured, GLAD to live in this era when there are a lot of successful treatment options, and also STILL REALLY MAD that I got breast cancer (again--a totally new one 15 years after first one was cured), and that we have to go though all this. My internal emotions needle MOSTLY points at Grateful and Glad, but sometimes the other emotions (Anger, Terror) boil up and the needle moves to the darker side. Mostly doing okay. But, I definitely also feel more vulnerable and more fragile.
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rachelcarter35 you are right about the anniversaries. Feeling them too. But you are also on the right track about moving forward. My MO told me back in 2012 that you can worry for the next 10 years and it comes back or you can not worry for the next 10 years and it doesn't come back. The only difference is how much of your life you waste on worry. It took about 2 years for me to get my brain around that. Not as easy as it sounds, but good advice. LIVE your life. If the other shoe drops, you deal with it then. That is what the last year has been for me. In the meantime, I got to watch my girls graduate, get married, start careers and spend time with family and share joys and griefs with them as well. That's what life looks like.
Only 7 more Herceptin to go. Start Zometa every 6 months X6 in April. And 10 years of Letrozole which I started at the beginning of February. Plus dealing with SEs from treatment. So not finished with Breast Cancer, but moving on. Joined the gym again to at least feel like I have some control over what is happening to my body. Also, working on weight, diet, mental health and the things I can control. My youngest daughter got engaged and so life is moving forward. Hair is growing back, so hopefully I won't be the bald mother of the bride.
Hiking Lady - my neuropathy has improved some and I hope to be able to paint again with a bit of finesse. Hope yours improves too. Making art/music is another way of regaining ourselves.
Hope all the chemo ladies are finding bits of themselves again and wish everyone the best as we head into a new year.
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HikingLady, do try acupuncture for neuropathy! It worked for me.
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Thanks, InnaB2018 --I'm so glad you had success with acupuncture for neuropathy. I had acupuncture a lot of times a few years ago for another ailment, and it did nothing at all, but it's on my list of good ideas and things to try, for sure.
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You woman all rock!
Hikinglady you made me laugh. My best friend gave me a black tee shirt that says F**ck Cancer is big white lettering. I don't wear it out in public but around the house with my platinum pixie haircut I feel like I'm getting back to my 18 year old punk rock roots. I've been taking the L-glutamate your nutritionist recommended. I have mild neuropathy in my fingertips and when I sweat at the gym I get pins and needles all over my body. Is that neuropathy too? I think doing art is such an important part of staying sane. I'm sorry this is messing with your piano playing hikinglady. Hopefully it will resolve itself. It sometimes does.
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