August 2015 Chemo Group
Comments
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is anyone else losing their eyelashes? Mine have thinned a lot. I've read that sometimes they fall out after chemo is done. I have one more round on the 27th.
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So far I have all my eyelashes, but I've lost all my dark eyebrows and I only have blond and white left. I didn't have very dark eyebrows to start so now I use a light brown pencil on them. I've stopped wearing other make up as my eyes are bothering me and I got a rash right where I was using the blush
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I made a comment today to my MO saying I think we have blasted all the cancer (4 cycles done). He said he agreed. So I asked if we are overtreating and if I need all 6 cycles. He said that was a very valid question. But he is also very good about changing the subject. I let it go, but then I asked about radiation. Why if my tumor is gone, and if I complete all the chemo which is going after every last cancer cell, and if my surgeon confirms there is no cancer after the lumpectomy, why rads? He was more willing to discuss this saying it is also a valid question but without a clinical trial they will stick with the set standard of care. I said "start a trial and sign me up!". He said it doesn't work that way, and I get that, but especially for those of us who are HER2+ and respond to treatment we need to fight to not be overtreated. Women have done it before--radical mastectomies are not the standard anymore. I say all this, but I am not one to start a revolution. But by golly if I found a no rads trial for HER2 NED by January (HA!) I would jump on board.0
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welcome home Dee.
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Musosgirl Worry-Wart is doing much better now "the torture is over". (his words). I'm still tired, & he wants to know "how long would this last?" My last TC was 9/28, so today's just day 18 & WBC still coming back, it's probably going to take a while. I wish I can go on long holiday! still recovering. Plus, my MO ordered an Echocardiogram, after consulting with Cardiology. Had x-ray couple weeks ago, then a CT last week, which they found some concerning with the heart/ chest wall, so waiting to get the Echo... There was that afternoon/evening I went to ER with fever (2 Fridays ago), & my heart was racing couple of days right after last round. Don't know if that has something to do with that. I had some fluttering in my tummy, which I thought was my digestive system, but it seems it's still there... I think I am going to email my MO tomorrow....
And I haven't wrack the Worry-Wart on the head. We have 2 weddings to go to in Dec/ Jan. -- Not going "Together", but we belong to same church ministry, & we are both invited, & they probably going to put us at the same table. Should be interesting...
ABOUT HAIR: Since I have never lost all my hair on my head, it would probably same with eyelashes & eyebrows. Still holding on to them day 18 of last round today.
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For those that are having taste issues with food, switch to plastic silverware. I did and it has made a world of difference. Now I wish I could just get my water taste buds bac. I have a ey not woring as you can tell, so sorry for the missing letter. Will write more later on tablet as the missing letter is driving me batty and I am hoping to finally get some sleep.
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I am so glad that some of you mentioned hot flashes and sleep. I think this is why I am not sleeping tonight. I move so much as an arm and my baldy head breaks out in a half gallon of sweat, but if I take the covers off and let the fan blow on me then I am ice cold shivering and can't warm up. Will be seeing pcp Tuesday and will ask about the effexor. Day 9 early for me and I'm still nauseated and gassy. Glad that the AC treatments and Neulasta are done. Here's to hoping and praying that Taxol (12 tx) will be easier to handle.
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Suzanne50- I had a uni and I worry about what to do. My MO doesn't want me to, but after several conversations regarding my worry over keeping the healthy breast- she said it's my choice. My BS doesn't think I need to do it. I still worry because I don't want to do this again.
MsBrompton- I finished #11 taxol/herceptin and I'm feeling fine. Maybe it's because I see the end! Sending you good vibes for your 11th infusion.
I still have eyelashes but I heard I can still lose them after final chemo.
Wishing everyone a good weekend
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Dee, so glad you're home!
I had a small cyst in my right breast (the remaining breast), too, that has disappeared since I started chemo. My MO says this is normal, and that what's likely to happen is that the breast will become less dense following chemo and Tamoxifen, which will make it much easier to screen. I'll have a yearly mammogram on that breast (unless I notice any changes in it), unless I decide to have it removed. Honestly, right now I'm leaning towards keeping everything exactly as it is: wear a prosthetic on the left, and keep righty intact. If I had to do it over (aka, had more than three days to decide what kind of surgery to have, aka, hindsight is 20/20), I'd have gone with a double MX, but it is what it is.
I've gotten the same stats. There's really no risk of the cancer we're treating right now recurring in the other breast and, though my overall lifetime risk of getting a new primary cancer in that breast is slightly higher than the rest of the population, it's not so much higher that I can justify—mostly to my insurance company—a prophylactic MX. I do wonder this, though: if I opt for no reconstruction, which I think is becoming more solidified as my decision as time goes on, will they pay for that MX instead? Time will tell. . . .
So much of this speaks directly to the overtreatment idea that you mention, musosgirl, especially for us HER2+ folks. HER2 used to come with a terrible prognosis, and now it's one of the "best" (all things being relative) kinds of BC to get. However, we do tend to be overtreated. I just had my fourth infusion yesterday and I'd be delighted if I could say it was over; the last two are just insurance, for sure, but I'll take that insurance. That said, it's your choice whether to get your last two. If you can do it, think of it this way: you've already gotten through 2/3 of the sh**. You can always do one more, and one more after that, and then you're done (minus the Herceptin).
As for me? My echo came back even better than the baseline, so I'll continue to get my magic cocktail of Herceptin/Perjeta. I almost cried when my NP told me. Thanks, chemopause, for rendering me a crying, sleep-deprived mess.
I SLEPT LAST NIGHT. I took my first half-of-a-half-of-a-dose of Effexor and, though I'm well aware that one tiny dose isn't gonna do anything for the hot flashes, I only woke up twice, and that was to pee, not because I was drenched in sweat. I think the Ativan helped me sleep, but I'm hoping that by the time I'm done taking that (I only take it for the first five nights after infusion), the Effexor will have kicked in a bit. I don't know if I've said this before, but I hate taking pills. . . That said, I'll take whatever the hell I have to take if it means I'll sleep at night. To sleep, perchance to dream.
I still have eyelashes and eyebrows. They're not as full as they once were, but they're hanging on. I'm not betting the farm on keeping them, though; I'm told that the taxanes can make them fall out weeks after the LAST treatment, just as head hair is coming back! I still have body hair, too, on my arms and in . . . uh . . . nether regions (but not on my legs or in my armpits!). Again: it's thinned, but I think of it as low-maintenance, easy-upkeep. Gotta take the good with the bad.
molliefish, I just started noticing what you described a week or so ago about the hair growth on your head: I have some weird little long hairs that are growing faster than the others. . . I can't tell if they're blonde or white, but they're THERE. They help my hats stay firmly rooted to my head, too.
Superius, I hope everything comes out okay with your echo/CT. Waiting is the worst. Sending you a virtual hug.
Happy weekend, all. I wish you a weekend of delightful weather and all of your favorite activities. As for me? I'm grading papers on the couch. Don't be too jealous.
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Hello, all,
I haven't posted too much to this forum yet but finished 9/12 Taxol this week, after starting in August. It's great to read through this thread and hear from others who really get what it's like to go through this. Congratulations to everyone that we have all made it this far.
Mostly, I'm just coming to commiserate haha. I only have 3 more Taxol to go. All my friends and family are sayings things like "Only 3? That's so easy! etc." I KNOW they mean very very well and are trying to be supportive and optimistic and encouraging and I love them for it. But, inside I want to scream "It's not that easy!!" I dread these last 3 infusions and want this over so badly. So, I guess this is a vent of sorts but really just want to connect with other women who understand that, sure, 9 infusions down and 3 to go is great. But that doesn't mean I want to go through the next 3. I don't even know if I'm making any sense in typing this.
Enjoy the weekend everyone!
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Ann-3 more to go. You got this, you can do this!
I don't know wether to cry or scream....I woke up last night with a fever again. Barely home for 12 hours and fevering. I have a call in to the Dr to see what he wants me to do. I don't want to go back in to the hospital. I am so happy to be home. Hopefully he will just change my antibiotics.
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Carolyn - I have lost a small patch of eyelashes but for the most part they are still intact. My eyebrows have shrunk in size. They look like I've over plucked them near my nose. So far penciling them in has worked.
Ann - You got this girl. 3 more and you never have to see that chemo infusion room again.
Dee - Grrr. I hope you feel better and don't have to go in!
For those talking about prophylactic mastectomy, it's such a hard choice. I personally decided to remove my healthy breast. In a nutshell, I didn't want to worry about it constantly. I was lucky enough to catch the small tumor in the first place on the right side so I just wanted the peace of mind. Sometimes I wonder if I did the right thing, but in the end I'm happy with my decision. My only regrest was not considering the nipple sparing procedure.
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Oh, Dee. Hang in there. Cry and scream if you need to.
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Superius, my gene test came back negative. yay.
Suzzanne50 and Dee, BS says it's up to me. I have another appnt with her in Feb.
Dee, my remaining boob does feel less dense since starting chemo too. I thought it's that way from all the follow-up squeezing it had to go through since dx (j/k).
My mx side bothers me. Just pain/numbness specially where they took lymph nodes and some zinging pain here and there. Also, the 'good' side had Atypical Ductal Hyperplasia. Which, was taken out during my lumpectomy. In hindsight, I should have just a double mx. I don't plan on reconstructing. So I may just leave things be and not have anymore surgeries. I have until Feb to make a decision.
Hazel
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@Katie - I totally agree with you regarding the BMX. I had to make my decision so quickly that I couldn't think past losing the one breast let alone two. But had I gone for the double, I wouldn't be wrestling with this decision now. My screening plan if I keep the left breast is every 6 months mammo/sono alternating with MRI. I am surprised that you wouldn't have the same? Maybe it depends on insurance or dr. recommendation.
Is peace of mind worth going through another mastectomy? I am not really sure. I have a few more roads I need to explore on this before I make a decision. Seeing my BS in November and making a decision then.
Meanwhile, I finally feel back to my old self following last week's final chemo round. It took longer than the other 3. Feels good to feel good.
Dee- I hope you are feeling better soon. What an ordeal you have been through. Sending you positive thoughts and healthy wishes!!!
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Suzanne50 - That's awesome about feeling good since your last session! I just am now feeling good too after my third round, took 8 days. Phew! One more to go Promise to report back soon as you make your decision
Hazel
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All done Ladies, round four in the books. Didn't ring the bell, there was no one there to hear it, I rang it in my mind, off to bed soon to sleep off the Benadryl.
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woohoo Molliefish! I'll join your rank at the end of this month.
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Suzanne- glad you are feeling good!
Molliefish-Congrats on being done. I can't wait to get there too.
The cancer clinic nurse wanted me to go to Emergency. My MO and his nurse were both off today. I told her I was it going back there. Spent a day and a half there this week and wasn't going back. It is such a shitshow there and I don't want to catch anything else. I ended up going to my family Dr. He didn't feel I needed to go to the hospital. Just keep on with my antibiotics, drink lots of fluids and if I get worse to go In. He just thinks my body is reacting to the chemo and trying to clean up all the shrapnel that chemo has caused. Getting rid of all the cells it has killed. I came home and slept all afternoon. I will just lay low. Not sure if I will get my last chemo on Thursday or if it will be delayed. So sick of this....0 -
DeeRatz, sorry you are still dealing with this. Hopefully laying low this weekend will do the trick.
Congrats molliefish!
I am struggling today. SE aren't bad, just not mentally up to dealing with it. Thankfully my body let me nap for a bit.0 -
@DeeRatz, what a bummer. But Madonna will probably be doing concerts well into her 80s 😎 so I'm sure you'll have your chance.
So tired. Hubby has been on a business trip all week so I've held down the fort with middle schooler, dog, bird, and now a treatment day. I had a huge project due for work yesterday too (rains::pours) so I haven't slept well. On the other hand: My friend who brought me food very kindly took in the middle schooler for last night and tonight, because I had to leave so early this morning and am picking up hubby at the airport so I won't be home until late tonight.
Friends are an incredible blessing in all this mess. I told a close friend last night & I knew he was big on the annual Cancer Walk in town, but it turned out that he's very active with the local American Cancer Society group. He wants me to come and speak to them about screening. I could be a screening poster child. (I told him I'm happy to do it but please warn me if there's going to be a story in the paper, because my folks read it religiously every day. Not the way I'd like them to find out.
I'll try to write more later, just wanted to say I'm still hanging in there!
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Hey all...I'm the original sbeddows but forgot my original password and somehow email address too anyway just had my first dd taxol after 4 ac and have found a lump in the bad breast it feels very much like the swollen axillary lymph node I had in the armpit at the beginning of things (that came back at positive after fna). I am now freaking out to say the least. I guess I am hoping somehow this is a cyst but I think I know in my heart it is a sentinel node. I thought I was winning this battle with the neo ac doing so well but now I feel like I am losing of course it is Friday so no way to talk to the doc until at least monday.....has anyone else had a similar experience with a positive outcome?!
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Hello sbeddows I can't comment on your lump of course but I had a freak out moment just after starting taxol when I found a BIG lump under my armpit. The more I felt it, the more it felt like cancer. But it turned out to be a seroma from the mastectomy (completely benign and I've still got it - apparently they take months to settle). But before it was diagnosed, I spent hours / days worrying. The only other positive thing I can think of to say is: the medical evidence shows that people who finish chemo/radio are much more likely to do well than those who don't. So even if it is positive the chemo will be doing you good.
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Well, here I am to write more as promised. Even though I was dead tired when we came home at 1am, I found things to do around the house and now it's 3am. Just discovered my hair loss is accelerating, and still no sign of my chemo diva halo wig nor contact from the company. I feel like my hair's in limbo.
Something I found out this week: I'm not sure whether I've mentioned it here or not but every time I've had a weekly blood test, it's shown elevated levels of potassium in my blood. My MO, naturopath and nurses were all expressing concern about this but no one was sure what was causing it. At last week's meeting with the naturopath she gave me a list of low-potassium and high-potassium foods, with instructions to stick to the low-potassium ones. I was starting to get pretty bummed out about it because it turns out some of my favorite foods were on the high-potassium list. But my result this week was different and it turned out to be because of the way the blood was being drawn by the tech! She was having me squeeze a little foam rubber toy as hard as I could to help her find a vein. I would only let it go once the needle was in. But this time that tech was on vacation and her replacement had a background in cancer care. She told me if you have cancer and are getting a CBC, you should never squeeze something before a the test because the squeezing action itself causes the red blood cells to lyse and that releases potassium into the blood. Potassium can be an indicator of heart damage from the chemo so it's important to make sure it's being taken accurately My potassium was normal all along
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Here's different:
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I saw tats like these before. There is at least one web site dedicated to breast cancer art. While it may not be for everyone I think some of them are quite beautiful. I've been thinking of a tattoo but with only a lumpectomy and still in tx I'll pass for now. Someday though.
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Mom2aboy-I am a lab tech and squeezing a ball like that is a big no no. You can make a fist initially nut should release your hand once they find the vein. Never ever pump your fist. Glad they figured your high K out.
There are some nice tats out there. I think I will stick to the 3D nipple tattoo. I am considering getting one on my foot. I would like a small pink ribbon and several little doves. Each symbolizing my surgeries, chemo infusions. So I will have to wait until I am done the process to see how many doves I will have. It may look like a flock of seagulls by the time I am done.
I think I may have turned a corner. Feeling more like my old self again. Hopefully it stays that way. A few days of being normal before I start this all over again.
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yay Dee. I'm glad you're feeling better. Still in bed here a noon. Kind of afraid to get up. Feeling more out of sorts than any other round. Booooo......
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Mollie-Stay in bed. Your body is telling you something. I plan on laying around watching Netflix all day again. I am feeling better but I am not going to push it. Just letting my body heal. I did manage to do some things around the house and showered and feel almost human again
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Dee, I'm glad you're feeling better. Netflix to the rescue! And Mollie, stay in bed!
We started watching Boardwalk Empire. Late to the party, per usual, but it's pretty good.
This round (4/6) hit me HARD, physically and emotionally. I was super excited that the Effexor would knock out the hot flashes, but no. . . and, instead, it gave me a grade-A panic attack. Granted, I was also worried about my liver enzymes (which have doubled since I started treatment), but I never want to feel like that again. Needless to say, I'm not taking any more Effexor, and I'm calling tomorrow about the liver enzymes. I've read that they can become temporarily elevated during Tax/Carbo, so I'm hoping this is a temporary thing. In the good old days, I'd take milk thistle to support my liver--I guess that's something to add to my post-chemo list.
I think I speak for everyone here when I say this: I'm so f***ing tired of feeling like this. I know I'll turn the corner late next week and feel better (both physically and mentally), but this is a real drag. I had a couple of moments on Friday when I thought, "hell, I've done four infusions, that should be enough. . . " I know they want me to get all six, and I'm sure that in a week I'll be back to thinking I can do two more, but I also wonder if I'll ever feel right again.
Honestly, it's torture. We start to feel better, and then BAM: blasted again. I'm to the point where I'm developing weird associations and aversions--for example, I don't want ice in my drinks anymore, because I chew on ice during infusions and it makes me gag (literally) to think about!
Yesterday I spent the day on the couch; today is looking pretty similar. Hoping I feel well enough to go to work tomorrow.
Sorry to be such a negative-nancy. I just had to vent. I'm starting to feel like the cancery friend, and I hate that this is consuming so much of my identity. . . . I figured y'all might be able to relate a bit better than my non-cancer friends and my partner. My partner said, last night, "I just want a day without cancer." Yeah, me too. ME TOO.
On the plus side, I'm a Michigan State fan, and last night's game blew me away, in the best way!
I'm gonna do my best to get out into the sunshine today for a walk, too, which always raises the spirits.
Thanks for listening, ladies. Happy Sunday to all of you.
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