August 2015 Chemo Group
Comments
-
Well, it sounds like we're all having a boatload of fun, aren't we? Rads is no joke. I mean, I joke about it all the time (microwaving, zaps, the fact that the accelerator looks like a giant Kitchen Aid), but I expected it to be easier. Psychologically, that is. Physically, it's way easier than chemo (for me, so far), so musosgirl, don't give up hope!
gooseberry, I hear you on the echo results. I was denied for life insurance because of some deal with my mitral valve that my MO never mentioned. After much ado, it turns out that my mitral valve has been misbehaving from the outset: my first echo in July proves it. Oddly enough, the problem was undetectable in October, but then back in December. I suppose we'll see what March brings. She said it's normal(ish), not to worry, and that we're keeping an eye on it. Of course I go to worst-case scenario and imagine open-heart surgery, but methinks I'm getting ahead of myself. I'm not gonna lie, though: I've always had a huge fear of heart/lung stuff, given my family history, and none of this has made that any better.
I'm getting chest-wall rads, so I have a pinkish-tan box on my left side, from my sternum to my armpit and down over my ribs. It's actually hilarious, if we take away all of the fear. In fact, that might be my new mantra: it's hilarious when it's not terrifying. I had some shortness of breath that I think is anxiety (actually, I know that it is, because half an Ativan made it go away), but I immediately went to lung fibrosis. What the hell? I thought I was done with the exaggerating-health-things-until-they-make-me-panic stuff. . . . Thank god for a good therapist, yoga, and a supportive partner.
I have an itchy rash on the outside of both calves. It could just be really dry skin, but really? Now? After all this? Again: I hear you. Three cheers for medical mysteries.
I console myself with the fact that I can poop normally and walk up stairs again. It really is the little things.
0 -
gooseberry - Have you considered an AI with ovary suppression? The blot clot factor worried me a lot which was one of the reasons I chose an AI instead of Tamoxifen. Also while I was deciding, my MO said that the side effects of an AI were not life threatening and Tamoxifen could have side effects/warnings similar to birth control pills.
0 -
gooseberry When I finished my surgery so not to do with rads but it might help to know. I had a rash break out all over my chest. I also had some thrush. My doctor gave me a nystatin mouthwash. He mentioned it does happen with women in Chemo and rads from yeast breakout. I started to take a probiotic ( the refrigerated kind) Proved to help immensely. I just wnted to suggest because it was a very annoying problem to have on top of everything else.
Kate I feel for you with returning to everything after Chemo. In my life everything just feels a little off. I feel a bit discombobulated.Just trying to take things one day at a time.
0 -
"I console myself with the fact that I can poop normally and walk up stairs again. It really is the little things."
Haha! Yes!
And I agree with exerciseguru also. Everything feels off and discombobulated. Naps help.0 -
Hang in there with the rads, ladies. I am reading your stories and feeling for you all. (I chose mastectomy to escape the rads - preferred to have it all done in one day).
Those who are HER+, check out the thread 'Looking for Her2 Positive survivor stories'. It's heartening to see people popping in to say they had BC 10-15 years ago and are fine now.
0 -
I had a BMX but still needed rads...just lucky, I guess.
How are you all feeling with your overall joints & muscles? I'm still having extremely sore & achy thighs, plus occasionally my feet hurt. I keep walking every day, but it's tough. I hope this is still normal recovery from chemo & not the way it's going to be forever.
0 -
JenPam, I was feeling loads better, but rads seems to have made me achy again. Honestly, I think it's dehydration; once I got out of the habit of drinking a gallon of water a day, I kind of slipped back into old habits (coffee, water only when I'm thirsty, etc.). Yesterday I felt okay once I was up and around--I was very creaky when I woke up--but when I arrived at the infusion center for Herceptin, my favorite nurse took one look at me and said, "you're dehydrated. Stay for fluids today." I stayed for 300cc more than I usually do, and this morning, I'm not creaky. Go figure.
All that said, some days are better than others, for sure. My MO says this is, in your words, "normal recovery". . . It can take months. Another woman I know who had BC said it took a year for her to feel "normal" again.
Do you find that any of this corresponds to Herceptin infusions? I sometimes feel a little flu-y for a day or so after the magic juice; I've found that asking them to run it over 60 minutes (instead of 30) seems to help.
For what it's worth, I also had a BMX and am doing rads. I decided to fight fire with fire: aggressive cancer, aggressive treatment.
0 -
I was REALLY achey after herceptin last week. And I had some blood tests about 4 days after, which showed very high levels of the muscle enzyme creatine kinase (in other words, I was achey because I was breaking down my own muscles!). My friend who had Herceptin 5 years ago warned me about feeling achey for a week after every infusion.
I like the dehydration hypothesis. I too have slid back into normal drinking habits and perhaps that didn't help. Maybe we should drink gallons on and immediately after herceptin days?
0 -
I'm LOL inside about MsBrompton's "choosing mastectomy." I wasn't even given the choice because of my size.... I thought I was a B, but according to the Nordsrom lady, Nope.
0 -
Kate, interesting about rads making you all-over achy again. I suppose I thought rads would only cause me soreness in the immediate radiated areas, but it makes sense that there's a systemic effect (e.g., fatigue). I'm going to keep hoping that I'll feel better in a matter of months, if not weeks. Re: hydration, I never drank water before I was diagnosed, but since June I've been drinking 8 cups of water daily. I've continued that since I finished chemo, and I *believe* that's more than adequate for my size. I can't drink much more--I'm already floating away most days!
I don't think my aches & pains correspond to my Herceptin infusions, because for whatever reason, I feel nothing after my treatments...maybe a tiny bit of a runny nose occasionally, but that's it. I was open to running the infusions over 60, not 30, minutes, but since I've had no SEs, we've stayed with 30 minutes. I hope my body's comfort level with Herceptin doesn't mean the medication isn't working effectively.
LOL superius! I was a 32C before, and I'm a 32C now with my prosthetics...or, as is the case most days, a flat lady with her husband's T-shirt on.
0 -
Just a hi to everyone. The hair growth is slow-going....but in other news, we got a dog! He has been such a great distraction and reason to move more. I think of all of you often.
0 -
Hello, Bluefrog's dog! Welcome to the forum. What is your name?
Great to see the fuzz become hair :-)
0 -
His name is Macaron. We call him Mac.
0 -
Bluefrog, you look great, and Mac is adorable!
0 -
Macaron is cute. & the name, too!
0 -
Rachel, you look beautiful--love the new hair! And Mac is a sweetie!
0 -
Rachel-your hair is coming in good.
I had my last appt with my MO. I have been discharged from the Cancer clinic. Yay!!! I will now be followed by my GP. It is a good thing as my MO was pretty useless. He told me today that I need to see my Dr every 6 months and get regular Mammograms. It was at that point I reminded him that I had no breasts.....and I was happy to leave him. I should have changed MO's but I didn't . My PS who I met with after for my post-op exchange appt has been way more help to me. She said if I need any referrals or have concerns that she would help me out. She is a year post BC and she has helped me navigate my way through many physical and emotional things this past 8 months. She has been amazing and I am very thankful for her
0 -
Herceptin makes my lower back hurt for 4 or 5 days after infusion. I never noticed when it was the TCH chemo or the nuelastra, of course that crap made me hurt all over so maybe I couldn't target just back pain then. When it first happened I was sure it was mets or something and told the docs my back hurt and it had not before and they just jotted it down it was after a couple infusions I realized it came and then went so I knew it was the herceptin.
As for radiation... I was kicking its ass for 5.5 weeks and then it all went to hell. 5.5 weeks and all I had was some itching and some reddening of the skin. No pain, not really any increased fatigue, I lotioned with my aquaphor advanced therapy as instructed, did everything and then the fold under the breast went to bright red, then it started to crack, then I get these puss filled things that looked like pimples. By the end of the 6 weeks my boob and the under boob looked like smallpox with these puss filled things all over. I actually took a picture but I won't post it as it could traumatize a person for life. That was the husbands words because I of course showed him the pic lol The real life monstrosity is covered in white creams now so that was the best way to show how much I plummeted in kicking radiations ass. I have silverdene cream and some other cream and the area looks a lot better, the redness is almost all gone, the pimple things too but it looks like the skin wants to come off and it still hurts, a lot. Where all the pimply things were is like holes in the skin now, there was even some bleeding. I am 3 days out and its clearing up but the pain is not subsiding at all. She said 7-10 days so I will hang in there but man... This stinks. Has to be a large 3rd degree burn and I am too handle it all on my own with creams that don't soothe it. I think they are so if doesn't get infected. So thats my BBQ'ed life now. Hoping for some quick improvement.
0 -
Dee, yay! You're a free woman!
Gooseberry, that totally sucks. I'm finishing rads right now (9 days of zaps to go--I said hell no to boosts), and I feel you. I can't even imagine having smallpox-like-things; I would freak out. Are you doing saline soaks? My RO has mentioned saline soaks twice, even though right now I'm just red and becoming itchy. Good luck, sister.
Maybe radiation is ALSO the gift that keeps on giving?
I'm done with gifts from cancer treatments, I think.
Edited because it became obvious that something very bad happened to my post.
0 -
"Maybe radiation is ALSO the gift that keeps on giving?
I'm done with gifts from cancer treatments, I think."
EXACTLY lol, I cannot agree more. I feel like I am still cooking 3 days done... Done with the gifts!
0 -
I have no idea WTF happened to my last post, but I fixed it.
Gooseberry, I was trying to ask whether you're doing saline soaks for the pox.
0 -
Gooseberry, that sounds awful--I'm so sorry! YIKES. (((hugs)))
So far after 22 rads, I'm red and itchy...but I have 11 to go, including boosts, so we'll see. *fingers crossed*
0 -
Oh yeah--check out the back of my head!
(I had my hair colored a few weeks ago; otherwise, it would be entirely gray.)
0 -
Hey all!!!
Been ages since been on here, hope youre all doing well!!! Im 10 weeks post chemo, back at work 3 days, still a battle, when I get up in the morning I can't walk, the pain in my legs and feet is horrendous until I get moving. Im on my feet all day in special needs classroom and struggle with extreme fatigue. If I sit down at the end of the day, the pain is horrific when I get up, its not just the underside of my feet, its my entire feet..I had no idea. My Breast Care nurse rang and she said its Chemo...that it will eventually get better. Wow!!! hope so!!! I don't sleep well at all, and this adds to the fatigue. One thing I was told by MO, is Arimidex causes lower back pain...awwww he wasnt kidding, so struggle everyday with it. Trying to stay active and exercise hoping it helps but it doesn.t
Anyone else experiencing that?? Good news my eyelashes all came back, long and full, no problems at all...Ive been in heaven lovvvving them! Yay! and my hair is growing evenly a full head and Im fair, who would have thought. Im super happy, I have a crew cut, so not comfy yet to wear that. Will wait til its a few inches long, then dye it with a safe dye LOL white blonde! and rock an edgy cut.
Oh to be relatively normal again, life is good!!!! My journey isnt over uuugh!!! As I had a recurrence in 4yrs, my MO is thinkin Mx to be ahead of it. But for now am getting back into life...and feel blessed for the arduous, gutwrenching journey we are all facing...because I found me..and learnt to honor me for the first time in my life.
0 -
my pox blisters went away. Well more like they burst and made all of my skin lift off. Its peeling like a sunburn but the underlying layer is not new fresh skin like a sunburn, its red meatly flesh and it bleeds if you clean or rub it too hard. I am not doing any soaks, just using the silvadene cream and the one for yeast. It looks horrible but the pain is less and it looks better than the puss filled blisters. Just red and when the no skin resolves itself and heals it should be fine. I had to shed all the skin apparently and now wait for it to come back... like hair I spose but sheets of skin... I much prefer the hair!
0 -
Mel, I have pains similar to what you describe, especially the achiness & stiffness in my joints until I get moving. Standing up and moving is extremely tough, but then after I walk for a while, it's manageable. I'm hoping that when I finish Herceptin in October, things will improve.
Gooseberry, owwwwwwwww! (((very gentle hugs)))
0 -
Mel, I am having a lot of leg muscle pain too. My lower back pain has lifted. I thought it was the herceptin but maybe we just have to give it more time. I'm doing ok, but have had a headache for over a week and the fatigue from radiation is intense. Gooseberry that sounds awful. Hugs to you. I count my blessings I've had no major radiation side effects. Now on to herceptin until August, and I guess I start tamoxifen next week. Here's a pic of my pup. Her name is Sally, my name is Raven. She has brought me a huge amount of comfort through all of this.
0 -
Ahh love the puppy picture. My animals have helped me to face this journey with as much resilience as I can muster.
I have been on Arimidex 5 weeks now and post Chemo and hysterectomy. No estrogen left I guess. I am creaky when I get up from sitting even for a few minutes. Also my arms and hands ache like crazy in the mornings. I tried sitting on an exercise ball while doing computer work. Still the first ten feet when I stand up its like I can't barely walk. I am hoping it gets better but I hate this "new normal". Its tollerable but definetly tough.
0 -
Awwww Love the Puppy!!!
Sounds like we are all experiencing the same thing! OMG when I first get up from sitting EXACTLY first 10 steps bad then it gets better. First thing in the morning is horrific...cannot walk. My Nurse said its the Chemo does this, so I think the Arimidex on top of this makes it worse. Oh boy, the new Norm?? I hope not feel like Im 80 LOL
0 -
I am experiencing the same thing: super stiff and painful when I first get up. I certainly do hope it gets better!
0
