August 2015 Chemo Group
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Kate, welcome home. I've been thinking of you. You are such a strong woman!! Remember the three R's .. maybe not as popular in your generation as mine, Rest, Relax, Rejuvinate! (or recuperate) Never mind Radiation now. At the end of January we'll chat about it.
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Oh mama-bear, I've done that (gone to the bathroom and cried, and then had to walk past everyone on the way out, looking down so they didn't see I'd been crying!!!). Your body didn't need that #12 Taxol, so high-5 for reaching the end of that journey.
Kate, welcome home, hope all is well.
And re that assumption that the end of chemo means 'back to normal', look at this email from a boyfriend I dumped THIRTY YEARS AGO, now divorced, with whom I have exchanged Christmas cards every year since (he never took the hint): "Realise you're busy but now the health traumas are (hopefully) over perhaps we might get together for a drink or whatever sometime in the New Year. it would be good to see you and catch up on life." As in: now you're no longer full of cancer I can resume my futile attempts to rekindle a dead relationship, overlooking the fact that you are still happily married...
Oh well, gotta laugh!
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MsBrompton, that is hilarious.
Kate, welcome home - you achieved your goal! Got it done in 2015! Congrats.
I'm wondering, now, is bladder neuropathy a thing? I had not heard of it at all until reading today's most recent comments. I've been noticing some odd difficulty but I thought it might have to do with my diet returning to "normal" post-chemo and putting on a little weight.
Happy almost new year's ... HHH2016!
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Melclarity, great reminder!
Kate, so glad you are home. Rest well!
Yay, Mamabear! I cry every time I think about my final chemo. I wonder how I'll get through it.
Ms Bromptom, too funny! At least he is persistent.
Mom2aboy, I don't think it is very common. None of the nurses I've talked to at chemo were familiar with it. My symptoms are numbness while urinating. I can't feel it coming out. I also don't seem to have that early feeling that I'll be needing to go in a while. I feel the need to go when it is a bit more compelling. Not urgent, but definitely not as early a warning system as I'm used to. A few of the nurses have told me they would stop chemo for fear of this becoming permanent. I'm starting to wonder if I should quit. I finished 10 our of 12 Taxol so far, plus I already did the four DD AC.
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did someone say turkey tail on here? What brand...... I have been hearing it a lot lately!
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Hi Mamabear, it was me (and I think one other person might have mentioned it too). I'm using Host Defense brand. Two capsules are supposed to contain 1g of mushroom. I take one in the morning and two at night, supposed to wait 2 hours between eating and taking the mushroom capsules. (It doesn't cause nausea or anything, it's just supposed to be more effective if you avoid taking it with food.)
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Hey Everyone!
Just wanted to say I've nearly hit 3 weeks post chemo and thank God!!!! pain is starting to ease, only take meds first in the morning and then at night when I go to bed. So ever so slightly is improving and I feel so happy that am progressing, havent started walking yet, but noticing my stamina getting a little better doing things around the home...slowly but surely!
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Melclarity, that's great news! So glad you're feeling better. I would be, too, if I hadn't just had major surgery.
Tam-iam, did you decide whether to continue with the Taxol?
Mom2aboy, I'm taking a similar product to boost my WBCs (see below), and will brow-beat my MO into letting me take Turkey Tail. We'll see what the RO says--he doesn't want me taking anything if I do rads.
mamabear, congratulations on finishing! Woo-hoo!
MsBrompton, I hope you told him where you could stick it. I had a student from last semester send me a very sweet, well-meaning note--in it, however, he made reference to "abnormal health conditions." I had to laugh.
Thanks for the well-wishes, everyone! I made the mistake of looking at my pre-op CBC--I totally had surgery with moderate neutropenia (<1000). Fingers crossed that it resolves itself in time for me to go back to work next week. . . . I'm trying not to let the anxiety train run me over, but it's hard, especially given that my WBCs remained stable all through chemo. Why would they drop so much, five weeks PFC? Anyone have sage words of wisdom for me, the great overthinker?
In other, better news, my RBCs are coming back up into the normal range, so I have a lot more energy than I did even two weeks ago. More energy + avoid crowds. . . hmmm. I suppose a trip to the woods for a hike might be in order.
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Kate - I hope you are recovering well from your surgery. (No advice on the WBC.)
Mamabear - Congratulations on finishing! Thursday is my final Taxol -- I've felt on the verge of tears for weeks, so I expect to be crying in the bathroom too.
I am so happy to hear everyone's stories of starting to feel stronger and more normal in the weeks PFC. I've been wiped out on the weekends (day 3 and 4) after the last few treatments.
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Kate, I just had my blood tests 8 weeks post final chemo. Most were fine but lymphocyte count was really low, way lower than it was during chemo. Oncologist said don't worry, happens. Suspect your neuts are same. Keep looking up!
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Kate - I'm quite sure too, that its normal for them to be low, its still early and your body is still recovering and rebuilding. My Vitamin D level is what they check down here at finishing was 29 it should be 75, so Im on 3 a day for a month then down to 2 a day the next month. I don't know what my WBC is, but I have blood tests in March to see where everything is. I say, try and relax knowing your body is recovering. I didnt realize sorry Kate you just had major surgery! How are you feeling?? Kate, when I finished Chemo 3 weeks ago, my Onocologist looked at my file and said, now go away forget everything, get back on my feet. I see him end of January, but he wants me to think of having a Mastectomy, I was so shocked, as my lumpectomy was more than enough, really wide margins, no lymph node involvement, but....because I had a recurrence in 4yrs in the same spot he said its not urgent but something to think about. I honestly still dont know what I'm going to do..my BS said it wasnt necessary, that my lumpectomy was enough that it was equivalent. So it has left me confused why the change of heart now. I must admit as I am recovering, the last thing I can think about right now is more surgery, I havent been able to work for most of Chemo. I lost my Contract at the school I was at, Im a Teachers Aide in Special Needs. So I have to return to my previous school, I have no sick leave left and financially really concerned if I go this road how I can support my family, Im a single parent. How many Taxol have you had?? I had 8.
MammaBear - Congratulations!!!! It is an incredibly overwhelming feeling isn't it? I took my 2 teenage kids with me, Nurses were so happy my last day for me, and I just burst into tears when I got there. When I left, I didn't know how to feel, I was happy, Sad and scared all at once. Glad it was over, was such a hard road, but scared to of what from here? you know? I've settled more now and as I improve each day, I'm excited to get my life back after 6 months.
Vicki - Good Luck Thursday!!!! wonderful news!
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I haven't checked in in awhile, so I thought I'd update before catching up on all of the posts. I finished Chemo in mid October, returned to work just before Thanksgiving and had my exchange surgery December 21.
I've been feeling great, getting ready to start the hormone therapy and then I felt a lump in my other breast. It feels so similar to the one on the right that was malignant that I'm sick to my stomach. I tried calling my oncologist twice today to see about scheduling a mammogram, but they haven't returned my calls.
I felt good about having a unilateral mx done because I wanted the recovery to be as easy as possible since I have a 17 year old with severe disabilities who I have to lift. Now I wish I'd had both removed. I am so worried about additional costs and surgeries and time off that I don't have available. I used my sick time and I have only been back to work six weeks.
It's possible this is just breast density, but I am worried sick. Trying to just do what I know to do and take it a day at a time, but I'm feeling sick over it. I need some encouragement, because I'm in tears over here. Thanks, all
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Carolyn, hang in there! I know it must be so scary, but try to remember the odds are very much in your favor that this is benign. If your oncologist doesn't jump on it and get you a mammogram, can you get in to see your surgeon? I'll be sending good thoughts your way!!! No fair to have this worry on top of all that you've been though.
Kate, yes I did decide to quit and told my MO today that I wouldn't be doing chemo tomorrow. When I went in for my neupogen shot on Friday, another RN told me I should quit and that pretty much all the nurses agreed. That's enough for me. So it turns out I had my final (10th) chemo on my 50th birthday. I'll take that for a birthday present. I almost made it out of there today without crying, but not quite. I go in tomorrow for my CT scan at the RO's office to prepare for radiation. That sounds like a much better day that going in for chemo.
It's interesting that my MO is having me start Tamaxofen immediately, even though I'm doing rads. It seems like, from what I've read, most MO's are waiting until after radiation. Of course, that could just be my chemo induced brain making up statistics.
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Thank you, Tam-iam! I've been trying to relax and not let the worry get to me. I talked to my daughter tonight, and I may go for a prophylactic mx next summer so that I don't have to keep going through this. My surgery recoveries were much easier than Ianticipated.
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Carolyn: thinking of you! I think it's the uncertainties of this disease that is the worst part. Please do keep us posted on how you make out. I hope you are able to get something scheduled tomorrow.
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Carolyn, I completely understand your anxiety... But the odds are in your favor. Just remember that, and know that everyone is rooting for you. Keep us posted!
Tam-Iam, I'd have quit, too, if my nurses suggested it. They're the best. I'm probably doing rads, too, as soon as I heal from surgery... I hope your simulation goes well.
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Carolyn62, please try not to think too much about it. I had a similar situation. After my lumpectomy they did the MRI , they found something suspicious in my other breast. So surgent wahted to do the biopsy first. At the same time I was getting ready for mastectomy on my cancer side( margins were not clear after lumpectomy) so I asked is it possible to do bilateral mastectomy and he said yes I have this option. So I didn't even bother doing biopsy . And after I recieved the pathology report saying that my other breast was healthy. Just had a lot of cysts. So don't think it's something bad, probably a cyst. Good luck to you Carolyn.
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Carolyn, I agree with Ruska. And just generally speaking, I try not to worry about things until/unless they happen (because by nature I'm a worrier!) I usually find that taking action helps me avoid worrying, so I think the idea of getting in to see any of the doctors involved with your treatment is a good one.
Kate, my nurse at my last Herceptin infusion told me that sometimes it can be weeks or months until all the WBCs and RBCs are back to normal. It has something to do with the bone marrow bouncing back after the chemo is over. Give it time! Sounds like you're recovering well from your surgery anyway, and I'm so glad.
Tam-iam, hurray for being done with chemo! That's the best day. It's been 6 weeks for me since my last taxol/carboplatin treatment. I can actually see something that resembles hair appearing all over my head, less patchy and more like the real thing. I'm almost to the point where I could get it buzzed for the Sinead O'Connor look. Things seem more normal now than they have in a long time. I went to a wedding over this past weekend and was actually able to get out on the dance floor and dance - my only worry was that my hat would fall off and I'd scare people, LOL. You'll get back to normal before you know it. I hope radiation goes really well for you.
Prophylactic surgery is my next hill to climb. I will soon have appointments with a gynecological oncologist, a breast surgeon, and a plastic surgeon, all at the same big-city hospital, over two days. I'll be getting a second opinion from them, after having met with my local breast surgeon & plastic surgeon several months ago. I adore the local breast surgeon, he did my lumpectomy, my snb, and my port placement, and they were all done beautifully, but the plastic surgeon he works with didn't seem too enthused about offering me a muscle-sparing autologous recon, and that's what I want. If the hospital surgery team says I'm not a good candidate for that, I'll probably just go back to the local team and go the TE/implant route. Or I might try my luck with a third opinion from the other big-city hospital, since my naturopath spoke so highly of the doctors there.
Lately I've been a bit preoccupied with the cost of all this. I don't know if I posted about this before, but I got the first "real" bill from my MO, and after two insurance companies have paid all that they're going to pay, I'm still on the hook for more than $1200. And that's just for my first couple of visits (the initial consultation and my first chemo infusion). I think I was a bit naiive, but I assumed that because I'm doubly insured, I wouldn't have to pay quite so much. Then again, I think I still had some deductibles left at that time - it was all the way back in August and I was just getting started - so maybe I'll be luckier as the remaining bills come in. I sure hope so. I can't actually afford to pay even the first bill, at least not all at once. I'm beginning to wonder if having prophylactic surgery is just a one-way ticket for bankruptcy court ...
On a happier note, I had a really good time at the wedding. It was of one of my best friends from college, and almost all of my old college pals and their spouses were there. I had so much fun, laughing with them and dancing. Tried not to spend too much time talking about cancer, but it was unavoidable because I hadn't seen half of them since my diagnosis. Strangely enough, none of them seemed to think it was weird that I was wearing a knit hat indoors all evening, and had so little hair. Then I told them why my hair was MIA. And then of course we had to talk about their relatives/friends/recommendations/books/diets. Dance floor to the rescue! It's hard to talk about cancer when you're boogie-oogie-oogie-ing. (OK, now I have to apologize to those of you who also lived through the 70s, because now you've got this going through your heads, right? I know I do ... the DJ's playlist was all 70s and 80s!)
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Thanks, mom2aboy. Hopefully the MO office will call today. I know the first week of the year after the holidays is nuts in doctors offices.
As for the cost factor, I'm with you. I met my deductible and out of pocket for 2015, and I'm making payments to several places. I have a 20% co-insurance payment, so I owe thousands. Not fun.
Well, starting another day back at work. Hopefully I'll get a call to set up a mammogram so that my mind is calmed
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Carolyn62 - You're in my thoughts. I am sorry that you're having to deal with this.
Tam-iam - Congratulations on finishing! Woo-hoo!
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I don't think I will ever know the "true cost" -- the Chemo didn't even show up on the statements (just visits to the Dr offices, Surgery, Pharmacy, & the ER runs).
One of the nurses who did the weekly PICC line dressing change was curious how much I paid for the Neupogen, since i did it myself at home (I paid $5 per shot) . She said if I go in to the medical building, to have nurse ministers the shot, it would be free.
I was charged more for the ER runs! than the surgery (out-patient). Cos they had to admin me that first time, but I didn't even get to see the room because they were able to release me before a private room is avail upstairs. & the Chemo didn't even show up on the statement, so I might never know.
Anyway, I think my energy level is still not quite 100% (or maybe it has to do with the Tamoxifen), I pretty much passed out by 11 New Year's Eve, then last Saturday when I attended a wedding (only stayed til around 8pm).
No news is good news: Had an Echo-cardiogram Dec 17 (because they found something "unusual" from the CT couple months ago.) Haven't heard back, which is fine by me. (it took about 6 week to wait for an earliest appointment -- glad it wasn't urgent).
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My insurance paid out over $230,000 in 2015. If any of you ever hear me complain about my insurance company, feel free to give me a virtual slap.
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How did/is your hair growing back? Mine is growing on the sides and back like male pattern baldness. Not a drop of hair on the top or front. Its just a little concerning because I thought my hair was thinning before all of this even began so hoping this is common/normal lol!
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My deductible is $7,000 annually. Plus there were some things that weren't covered. Thanks to my MIL we finished 2015 paid in full. But it's a new year and that $7,000 will be due this month--Herceptin infusions twice this month should do it. But I know my first 15 weeks of chemo came to around $130,000 plus I had surgery, so my insurance was a financial life saver last year.
My hair growth started on the sides, then the back, and finally on top. Others have said the same, so I think it is completely normal. Mine has slowed a bit length-wise, but is filling in.0 -
Musogirl - So glad to hear about the hair! I was wondering the same thing!!! Phew!!
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My hair is growing faster on sides and in back, too.
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Gooseberry, I'm following a similar pattern. I have fuzz and stubble pretty much everywhere except the temples (some of it is about an inch long now), but the temples and one spot on the back are just starting to get stubbly.
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Gooseberry - my hair is growing the same way. My husband says I look like Homer Simpson. Good thing I have a sense of humor.
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Kate, same here about the insurance! My out-of-pocket max is $1500. I had paid about $800 (Surgery, Pharmacy, ER, Dr visits) & not counting Chemo, weekly nurse visit for the PICC, tests, etc. This reminds me, I should contact the BC coordinator for referral for prosthesis... I think I get 2 or 3 every year? though I'm quite comfortable with the sport bras & the camisoles from post-surg.
My hair is much denser & seems darker, too short to see if it's curly or not. so far just about 1cm. Now the hats are just for warmth.
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When did you finish Chemo Superius?? Gosh Im 3 weeks post and really dont have anything is that normal? I do have a little stubble at the back, shouldnt I have alot more after 3 weeks??
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