Chemo starting October 2017
Comments
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Joyseeker, glad you'll be able to stay on schedule. Tabz, glad you're taking the postponement as a good thing ;-)
LisaRX, thanks for the info on the new staging that's coming up. my doctors have been encouraging me not to get hung up on the numbers or letters since I was diagnosed, but it's so damned tempting, especially in my own "research" ;-)
2brandy, I buzzed my hair down as soon as it started falling out. I had long hair and it was too traumatic to see that much hair in my hands. Much easier on my psyche when it was 1/4" long.
Re: a dry nose with blood. I've had that, too, for a while. It's gross. Here are some of things that have helped me:
#1 most helpful has been a good, cool mist humidifier.
Some products I'd recommend are:
NeilMed Sinus Rinse : like a neti pot but I think it's easier to use since no head tilting is involved. A few minutes after I rinse things inside my nose loosen up and I can comfortably blow everything out.
Rhinase Gel and Mist : the pump spray mist feel good and keeps things moist, the accmpanying gell feels really good spread inside the nostrils with a Q-Tip. Keeps things moist and comfortable.
Aquaphor - spread on outside, under nose. Heals the chapped skin from all the blowing.
If other people have had this problem hopefully they'll let us know what they've been using with success.
Good Luck!
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2brandy - I am in a similar boat as you and just asked input from these ladies too. Most people waited until about where we are to shave their heads. I know a few have said if you shave too soon, it can be prickly and uncomfortable, but many have said they felt so much better when they take control of the process. I would highly recommend finding a specialty wig store in your area and going there. My two other places ventures (a hospital wig supply and the American Cancer Society - both free) were not all that helpful nor were they that knowledgable. However, when I went to THE wig store in town with experts and a huge selection, it was an extremely different experience. I think it's worth it to find out who that would be in your area and check it out. It may be more expensive, but the ones I ended up liking ended up only being $250, so that wasn't the sticker high $500-600 that I was worried about. I think the selection, quality, and expertise is well worth the time to check it out.
I'll be honest, I can't wait until my husband gets back from out of town tomorrow and we shave my head. My head itches. Every time I brush against it, hair falls out. I want to run my hands through it so badly or wash it and it isn't a good idea. I think I'll be relieved when it's gone to be honest. But that's just me.
Sara & Tabz - Congratulations! Here's to turkey dinner all around!!
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Girls - I would also say that if you haven't taken the Look Good Feel Better class, you should check into it. I dug into that bag last night and pulled out the awesome skin moisturizer that was in there and eyebrow pencil, etc. It really is a great free class and the amount of expensive free products you get is pretty awesome. Check out if there is one near you!
~Sara~ "Wonders never cease if we never cease to wonder." -Ziggy
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Today I got a call from my Patient advocate asking if Id like to set up an appointment with a plastic surgeon. I have been fully focused on chemo up to this point and haven't even thought about surgery or reconstruction. And I didn't plan on thinking about those until I get the results of my genetic testing which doesn't happen until January.
Can I ask the rest of you that are having neo adjuvant chemo - have you already looked into this or made any decisions? I've been trying to take this one segment at a time because I see the full long range plan to be so overwhelming. Yet I don't want to be unprepared.
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Sara aka Joyseeker, congratulations on getting those numbers up so that you could stay on schedule.
Tabz, bummer about your numbers, but glad you have a positive attitude. You really should be feeling great at Thanksgiving, so thank God for small favors.
2brandy, welcome to the boards. Hair loss is very traumatic. When I shaved my head, I cried my heart out. So I understand. I also understand that while most people are very sympathetic and understanding, some just do not "get" it. I'll relay a story in my next post which will cement that point.
Agatha, thanks for the recommendations on nose remedies. I've experienced a few nose bleeds, and if Taxol makes my nose any drier, I'll definitely have to get something to coat my nostrils.
Simbobby, I am on the same regimen as you, I believe (4 DD ACs + 12 weekly Taxol?). I have not yet spoken to a surgeon, nor been contacted to schedule one. I honestly figured that'd happen in early January at the earliest, which would be a full month before I'd be a candidate for surgery. Maybe their schedules are so tight that they'd want to get the pre-appointment in now before the holidays??
I, too, will not get the results back from genetic testing for at least another week, and that is a key element to my decision. I also continue to be peeved that I won't know if my lymph nodes are clean until surgery, as I consider that to also be a key element to my surgical decision. If there is evidence of cancer in my nodes, and they fear that there are still cancer cells floating around after getting these 2 powerful drugs, then I'd actually lean towards a lumpectomy + radiation vs. DXM. It seems counterintuitive but my reasoning is this: Because my body will be severely weakened by chemo, and because there is still a chance that cancer cells are still floating around in my nodes, then my first priority would be to strengthen my immune system. The last thing I want to do is lop off 2 major body parts, and shock my weakened body even further, when I want all hands on deck fighting the cancer cells. Last thing I want them to be diverted to recovering from a major surgery and repairing cuts and creating more blood and WBC/RBCs, not to mention the risk of infection.
If, on the other hand, I have little or no evidence of cancer in either my breast OR my nodes, AND genetic testing reveals that I have a high risk of local recurrent, then I'd definitely opt for a DMX. No sense playing with fire.
However, if there is little or no evidence of any cancer at the time of my surgery, and the genetic testing reveals no extraordinary risk of local recurrence, then I'm back to considering lumpectomy + radiation to allow my body to heal. I could do the DMX and reconstruction in 6 months or a year, when my body has had time to recover. The major downside with that is the fear or recurrence, even though my NP said that there is no greater risk of recurrence for TN than there is for other types of tumors, but I want to get that confirmed with the surgeon. And, of course, I'm not sure if reconstruction would be hampered by radiation.
So lots of questions to ask!
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I'm playing catch up on the conversation because Round 2 of AC kicked my butt and today's the first day I could be on the computer for more than 15 minutes - so I'm responding to posts from Nov 7.
Agatha - to the peppery feeling in the sinuses. Yes, me too. My nurse told me to let her know if I was feeling it and she'd slow the infusion rate, which helped. I only felt it during the infusion.
Paulette, Stage, Joyseeker and Tri-lady - (and others?) It is so helpful to read your responses to Round 2 of AC as being hard days 4-7, physically and emotionally. I didn't think about the steroids being part of the emotional roller-coaster. DD every 2 weeks, so just as one of you said, just as I start to feel somewhat normal, it's time to start again. Round 2 really hit me hard with fatigue and the depression a couple of days ago was bad. My caregivers (and lots of other well-intentioned people) keep trying to problem solve, wondering what could be wrong - not enough Vit D, or not getting enough exercise (yes, that's true), not eating enough or the right things, not holding the right optimistic attitude, etc. when it's just chemo! It makes me feel like I'm failing the "take care of yourself" test in their eyes. So knowing that others are feeling hard hit and it's the chemo, not a mystery, makes me feel more sane. I am so thankful we have this forum!
Simbobby - wishing you well with your switch to Taxol. I will be eager to hear of your experience with it, as it's what's in my (and others') near future too.
Scaligirl - thanks for the share with the wigs and your sense of humor! :-) i received a big box tdoay from a high-school classmate who had b.c. awhile ago - she had hats and scarves to share. Turns out there's a long flirty blond wig in there - it's so not me, but now I'm tempted to post both my newly bald head (hair was coming out in clumps starting the day before Round 2) and the wig. Stay tuned! Still waiting for my purchases to arrive from TLC - my head was cold!
Jamocar - sorry to hear that the meds didn't help with vomiting. I ended up getting Ativan and it helps - yes, it does make me sleep and not care. But sleep is so necessary for healing and I hate the way the steroids make my gut feel, so I'm glad I have it.
I just took a hydrocodone (325) to help with the pain in my ribs (from the Granix I expect, but could be flaring Lyme pain - anyone else out there dealing with Lyme disease while going through these treatments). I can't take Claritin. I'm curious about others who might be experiencing pain from Granix, which I get shots 3x a week.
Someone else out there - can't find your post at the moment - mentioned feeling your mass softening. YAY! Mine is too. I meet with my oncologist tomorrow and I'm hoping that the tumor will measure even smaller than it did two weeks ago. (I can't believe it has been 2 weeks since he told me it shrunk by 2 cm, this past week has felt like a full month of just recovering.) I wish you the same confirmation from your doc!
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Okay, so here's my "Bad Customer Service" story re wigs. Because the holidays are approaching, which includes tons of parties and family get togethers, I decided to throw in the old towel and buy a nice wig. So 8 days ago, even though everyone here advises going to a wig shop, I got lazy and just looked around on the internet. I found one really nice Racquel Welch wig on TLC, however the color I wanted was out of stock. So I searched around for that wig, and found it on Wigs.com. A few shades were out of stock, but I found one I could live with that was in stock. They were having a 25% off sale, so I actually bought 2 wigs (@$300 each AFTER the discount) with the intention of returning either or both for a hefty re-stocking fee ($25 each) if I didn't like them. Since Thanksgiving is next week, and I have a few parties to attend, I paid $14.95 to upgrade to 2 days shipping, so that I'd have some time to check them out ahead of time.
I got an email confirmation on 10/8 that they received my order. They said I'd get another email confirmation with the tracking number. No email and no wigs ever arrived on my doorstep. So yesterday I called and asked what the status of my order was. The CSR investigated and said that not one, but BOTH of my wigs were out of stock. I was shocked. The website didn't indicate that when I ordered, although it did on several other colors. I said, "Why hasn't anyone notified me that the order that I thought would be delivered by Monday at the latest, wasn't even in stock?" She said that I SHOULD have received an "out of stock" email. I didn't. And, yes, I also checked my spam folder. So great communication on their part.
So I asked when I should expect to get my wigs? She said the week after Thanksgiving at the earliest and PROBABLY the first week of December. Meaning I'd not have my wigs for at least 2 parties. No apology, no sympathy, just curt answers to my questions. And it was CLEAR that I was upset.
However, I tried to maintain my calm and said, "Well, can you at least credit me for the 2 day delivery charge?" She said, "I can do that, but I'd have to change the shipping to Ground."
Me: "Why? I paid extra so that I'd get my wigs in 2 DAYS. Does it seem fair to you that I paid extra and won't get my shipment for 2 to 3 weeks now?"
CSR: "Well, I can give you the difference between the 2 day and the ground shipping rate, but then I'll have to change the shipping to ground."
Me: "Why? You should give me the 2 days shipping as a COURTESY because you failed to notify me that they were out of stock at the time I ordered then, or anytime AFTER I ordered them, and now you wont' deliver for 3 weeks, which is long past the time I should have received them even with the slowest ground delivery."
CSR: "Well, no matter when you get them, you'll have to pay for delivery. So do you want to pay for 2 day delivery or ground? Because if you want to reimbursed for the 2 day delivery, I have to change the shipping to ground. The best i can do is to reimburse you for the difference."
Me: "Wow. Okay. Please cancel the entire order then."
CSR: "Okay, I'll be happy to do that. But it may take a few weeks to get your refund ($600+) credited back to your credit card."
Me: "Of course it will. Thank you for ruining my day."
I was in tears at that point. I have a week left before Thanksgiving, and no wig, and really crappy customer service from a place that sells wigs to people who are battling cancer.
Silver lining: I searched again for that specific wig and found it on WigOutlet.com in the shade I wanted.... And it was 50% off, so $50 cheaper than Wigs.com. I called in the order to confirm that my shade was in stock, and it was. I paid extra for 2 day delivery, and just received notification that it shipped today.
Icing on the cake: WigOutlet.com is a subsidiary of Wigs.com. So not only did they lose my $600 order and will receive a scathing review on public media, but their own lower-profit margin subsidiary cannibilized their higher-profit margin sister.
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Oh Ms. Lisa. That stinks. I can't believe they wouldn't give you free shipping after that crap. How awful of them.
I was worried about buying from Wigs.com due to some reviews I read. I figured for the extra $30 the wig costs at my local store, I get the sizing, shaping, training, etc. for free from the experts, so I'm heading there Sat. morning to get my first choice wig...maybe even a second. I'll have to check out Wigoutlet.com if they were so much more responsive and reliable. Please let us know when they get here!
And voilalia - Show us the blonde flirty please! :-)
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On hair (or lack thereof)
Petey, (Sara?) I had my 2nd round Nov. 9 (last Thurs), and hair was coming out like yours that day. Tomorrow is Friday - did your hair hold out for your hubby's return?
For me, it was Day 16 (last Saturday) when it was coming out in major clumps from the back of my head. Even though I had cut my hair short a couple of weeks ahead of time to ease myself into a new look and I wasn't all that attached to how I look these days, it was still really upsetting (stomach-turning) to see that much hair in my hands, so I took myself to a salon that donates free buzz cuts for cancer patients. My sister went with me. Thank goodness I felt well enough - the next 4 days were awful and I felt like every cell in my body was alien. How are you feeling?
And brr... the noggin is drafty without hair! First night it kept waking me so I grabbed for a t-shirt out of my night stand and ended up with soft pj boxer shorts on my head! Yes, Homer Simpson print boxers on my head all night!
. The next 2 nights I wrapped scarves around my noggin until my sleeper caps showed up that I bought on Etsy.Here's the new do:
Hang in there, ladies! May the SEs ease up on you
, may your sleep be peaceful, and may the days of chemo ahead of us soon be behind us! There IS an end date - and I need to be reminded of that because I can get stuck in how awful I feel today. Now go drink some more water -all of you! 
Hugs! Lea0 -
AC #4 is tomorrow. Hoping that my blood work stays on course so that my treatment does the same. The last round really hit me— emotionally as much as physically. I cried so much during this last round. Maybe because it was during the time of when my monthly usually hits and my hormones are responding to that. Or maybe it's just depression over worrying about everything. Anyway, last few days I feel somewhat better but then I have ...treatment tomorrow and it starts over again. The burning in my nose and sinuses... just thinking about it makes me anxious. Hopefully taxol will be okay on me when that starts... better than AC.
Anyone else feeling a little blue? It’s not like me but this past week has been tough. I don’t recognize myself. I feel down about my bald head and fat body but right now there isn't much to be done except keep doing as my MO orders. I let go of the sad stuff as much as possible and I get on with my job and my life most days. Just sometimes this feels like a very lonely walk.
I hope I have a little space before taxol. Would like to have a drink with friends during this break for the holiday. I haven't had a drink since August. I will ask my MO if it will be okay ... fingers crossed.
Almost halfway through this thing....
Hope everyone having treatment is doing okay. Have a good weekend.
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Thank you Ms Lisa!
The EXACT same thing is happening to me from another online wig site.
Ordered the wig Oct 28 which they said was in stock.
Out of stock but will ship 11/10.
Nope can't ship 11/10 but will ship 11/24. Explained that I can't risk it, I have events and would like to make another selection from in stock inventory. They said the' call this afternoon and phone never rang.
So Lisa, thanks to your experience, I just went to wig outlet and bought two wigs for less than the price I paid for one at Headcovers. One was the wig I wanted in a slightly different shade and the other was my alternate choice. I have been furious all day. Now I'm feeling calm.
You made my day. In my chemo fog I should have figured out a solution but my strategic thinking is shot.
I love this site and all I glean from you wonderful women. Thanks for being here
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Glad it worked out for you Simbobby. Hope your new wigs turn out! I'm hoping that my new wig will not make me feel like an actor in a really bad drama.
Voilalia, the chilly noggin' is definitely a thing. I wear a cap every night to bed because it's too cold otherwise. But when I put on a wool cap to go outside in the 40-50 degree weather we're having, which is a must because the cotton ones don't give me enough protection, by the end of my walk, my head is steaming! I can't wait to get home and go commando for a while!
eightoutof, The week after round 3 was really rough for me, too. I don't know why because physically I was feeling fine. I think it was that I finally got over the shock of the DX and started looking forward, and realized the enormity of the mountain I was just beginning to climb. I mean, 19-20 weeks a chemo is a LONG time. A long time to be feeling bad and worrying about SEs and having to deal with being bald... and then realizing that you'll remain bald for months AFTER chemo ends. And it's made worse because no one can relieve us of it, which makes us feel lonely and weary. And then you can't even enjoy food because your taste buds have changed. And when you go out, you can have maybe one glass of wine or a lite beer because you don't want to overtax your liver. And some people treat you way differently because you have cancer. I have to actually avoid certain really good friends because I can't stand them treating me like I'm going to die.
So, yeah, I definitely get it. Cancer gets a lot of attention because the treatment is rough, both physically and emotionally. My only advice is to allow yourself some time to grieve, because it's not healthy to bottle it up, but don't wallow in it for too long. This is why they call it "fighting" cancer. Not getting caught up in statistics, not allowing depression to take over, forcing ourselves to take walks or drink more water when we really don't want to, not becoming more of a hermit and missing out on needed human interaction because you don't feel attractive anymore...that's all a part of our battle. And the only thing we can do is to wake up, get into our warrior mindset, and get ready for another day's climb.
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Petey- I was suppose to attend the Look Good Feel Better class but had to cancel since I didn't have childcare at that time. I figured I will take it later after I lose my eyebrows. I am not much of a makeup girl, I have no idea how to draw brows on or what to do when that happens to look better.
Simbobby- I met with a breast surgeon at my initial "you have cancer" appointment. Where I am they bring in 4 new diagnosed women, and you meet with the BS, medical oncologist and radiologist all at once, they rotate rooms and you get a few minutes with each. Then I had a appointment was a plastic surgeon a few days later. The oncologist recommended a double MX since I am triple negative, 45, and I have all sorts of issues going on. Probably benign but fibrocystic breasts, cysts, microcalcifications. As scary as the surgery seems, I just didn't want to keep fighting with these issues every years mammogram. Meeting with the PS, I was pretty horrified that I would not be able to keep my nipples but could do skin sparing. At the appointment he did all sorts of measurements and I was feeling pretty humiliated at the time of my saggy mom post-breastfeeding now cancer filled boobs. There was talk of expanders and implants, if I wanted flap I would have to go to another city 3 hours away as they don't do it here. I know the double mx is the right choice as the cancer goes but the reconstruction is still something I don't understand the process and how many surgeries it will be or if I am doing it for my husband and daughter.
Eight- I have been so struggling with the AC#3. It has been both physically and emotionally. Between normal chemo SE, fighting a cold, dealing with a one after another sick child issues, and suppose to be on period (but doesn't seem like that is going to happen). I have just been down and out. I have been getting night sweats (chemopause?) and not sleeping as well.
I thought was past the emotional part but when I started crying on the phone to the poor customer service rep, the other day, it comes up again. I was trying to cancel a christmas trip that was going to be so special and we planned over the summer. It would just be too hard on me and its 5 days after I start taxol, so who knows how I will feel then. I ended up getting a full refund on the trip instead of a cancellation fee. I really wasn't trying to play the cancer card. I didn't expect to start crying when she asked, if there was another date I could do instead.
I buzzed my head on October 29th and I notice the buzz hair is really thinning now. Seeing my white scalp more and more each day.
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Hi, All.
I'm about to head out for AC#4. My MO is out of town so I'm just having the treatment without her examining me first. It's funny, but it feels a little scary to do this "solo" - kind of like riding a bike for the first time without training wheels. I have come to really lean on the reassurance of my MO that the chemo is working. I'll just have to trust myself that I can feel the tumor continue to shrink. In fact this week it feels like 2 little tumors now instead of one larger mass. I'm also going to one of their satellite infusion centers that is closer to my house. I'm sure the nurses there will be just as good, but I'm a creature of habit.
Another first is that I'm going to chill my feet during treatment. Last week my feet were so tender and my toenails are starting to really darken.
Also ask them to slow the Cytoxan to help with the burning nose. Thanks for that tip!
I haven't had surgery yet and my mind is reeling with that whole part of this wild ride. I have so many questions to ask you guys about it. I'll post later once I can get my thoughts together enough to put in a post.
Have a great day, everyone. Anyone else a Friday chemo girl? I can't remember. (can't really remember anything these days!)
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You know Agatha, I have not had anyone feel my lump, my lymph nodes, no exam since my initial "you have cancer, here is the plan" meeting. I haven't even seen my MO or any doctor since then. I go in on Monday's, get blood work drawn and meet with one of the oncology nurse practitioners to go over my blood work results and ask any questions. She will listen to my heart and lungs and that is about it. Then go in Tuesday for chemo.
I did ask last time and I will get a ultrasound and met with the oncologist after my 4th AC and before taxol.
I really feel like my lump has reduced or maybe even isn't there. It use to feel like a hard bounce ball from a vending machine (I could see it protruding) and now I feel more like a pea. But I feel all sorts of pea size lumps in both breasts. Even the other one where no cancer was shown on the MRI. I remember when I first noticed it, they say feel your other breast if you have a lump in the same spot and I do. It was just so much more pronounced in the left, that proved to be cancer.
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Hi friends. FEC #2 is in the books. Spent yesterday throwing up (didn’t have this with #1) today I feel well. Knitting. Tea. Cheerios. Lol. I plan on a short, wintery walk this aft.
I envy you ladies who can feel your shrinking tumors. While I’m glad mine is out and that surgery is over, I wish there was a way to know if my chemo was working.
My next big appointment will be with the RO. Likely after Christmas. I will have to travel an hour and a half each day for treatment. Gag. Anyone else had this consult yet?
The wig stories cheer me up. I’m going to get my head buzzed tomorrow. I don’t envy you ladies on your surgery decisions. That’s a tough one.
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Jennifer, I asked and I won't get any ultrasound or MRI til before surgery, which is months away. If I had to choose, I'd rather get the ultrasound rather than relying on feel. I was even thinking of paying for an Ultrasound out of pocket because I like certainty. I don't feel the tumor anymore, but I do feel plenty of other lumps, which the NP told me not to worry about. The joys of having dense breasts!
Sara, glad you're feeling better today. I'm 2 days past my last A/C and the outdoors are calling me but I feel so blah. You have convinced me to get outside and walk, though, so thank you for that.
Agatha, good luck with chemo #4. Hope it's good to you. I forget if this is your last one, but if it is, cheers!
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Lisa. Sunshine and fresh air helps everything ☺️ Go for it!
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ladies, it has to be hard having to stay away from your babies!! I hope u all have healthy days.
Sorry I've been having cloud head and symptoms but yes today I'm good, geez I love day 5! This past Monday I did my 5th taxol & I am bald
I finally had my husband shave it on day 28 because it was coming out in clumps and u know what.... I don't cry in the shower anymore yay!! I'm gonna catch up on y'all but just wanted to say god bless y'all stay ++++ + mmmmwahhh!0 -
hi, it's probably just me but I'm doing 20 weeks of chemo (currently about to be on #6 on Monday) then I get a 4-6 week break then dbl mastectomy getting rid of skin & nipples, then I'm getting gummie bear implants! Then I'm getting ovaries & anything attached removed. I'm only 41, braca1 positive.
I just personally ain't putting myself through this again! Good luck with your decision!!! ++++
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For all you her2+ Sisters.
Last night I watched the movie Living Proof with Harry Connick Jr.
It's the story of Dr. Dennis Slamon, the oncologist who discovered Herceptin. It is kind of old (2008) and Lifetime Movie-ish, but I enjoyed it and it was uplifting.
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Hi, everyone!
Back from AC#4. In 2 weeks I start Taxol, possibly with Carboplatin, possibly without. My oncologist hasn't made her final decision yet. The plan right now is 4 dose dense sessions of Taxol. If I'm not able to tolerate that much at once they'll change the plan.
I'm a wee bit nervous about Taxol because I've already started to have some hand and feet symptoms already with AC. So much so that I decided to ice my hands and feet today during my last AC. I'll add some pix below. Even though I had the cold gel slippers the chemo nurse put extra ice bags on me. She also gave me ice for my hands (I was just going to hold some extra frozen gel packs. Ice was better.) Next time I'll wear thin cotton gloves though. My hand isn't directly on the ice but still it got intense through the plastic (they use a ziplock bag with an outside pocket you can slip your hands and feet into.) I hope I sucked enough ice. My mouth sores were rough last week. Would LOVE to lessen that. All the rinses and swishes in the world weren't helping. Still, I consider myself lucky. I'll take that over nausea or constipation any day.
It just happened the the doctor who saw me when I had to go into urgent care last week was on duty at the infusion center today. He stopped in to check on me and he teased me about the ice, saying "oh, that'll help" while he rolled his eyes (not in a rude way - just how we New Yorkers show love.)
Even if it doesn't help I'm glad I tried something. For any of you thinking about icing it's not nearly as uncomfortable as I feared (but then again I still walk the streets with a Starbucks cup of iced coffee when it's 0 degrees outside.) I'll definitely ice my way through Taxol.I also have asked my MO if I was going to have any imaging during chemo to see how it's going. She said no, that it was all done by feel until I am ready for surgery. I too would LOVE an ultrasound to confirm what she and I are feeling, but I just have to trust her. I realize now that I'm lucky to be spending a half hour with her every two weeks for a physical exam and question/answer session. Thanks for letting me know I have another thing to add to my laundry list of things to be Thankful for this Thanksgiving. You girls are DEFINITELY on that list
OK - here's what my hands and feet looked like for a few hours today, except when I took them off to wheel myself to the ladies room a couple of times. The upped my hydration this session and it was noticeable!
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Julz- I had to Google gummie bear implants and that is what my PS showed me. You can cut them in half and they don't leak.
My genetic testing will be resulted in a few weeks but if I end up positive. Yep ovaries coming out too. I think they also take your Fallopian tubes, not sure if anything else.
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So much going on today and I'm so chemo brain-y. I'll have to redigest this all tomorrow and make another post.
I did shave the head tonight. Hair was falling out so badly, I could barely wait for my husband to get home and do it. Phase 1 was a mohawk which was kind of fun. Phase 2 was a GI Jane style buzz. I wish I had taken a picture of it, but I wanted to rinse off so badly by that point, that I just jumped in the shower. Little did I know that my "rinsing off" in the shower was really just a cover for washing most of the rest of my hair off my head. Ooops. Oh well. It feels better now...at least for the moment. Here's where I'm at now!
Tomorrow will be nice make up, cute earrings, and a new wig. I'll feel better about it then right?
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Hey, Petey. Aw, baby. It sucks, I know. Tomorrow will be better - PROMISE. You'll put on your regular makeup and jewelry and try some scarves or your new wig.
I can relate to how you feel tonight, though. I sobbed in the shower when I got home from my buzz cut. It was the first time I really cried over the hair loss. I was all gung-ho going in for the buzz, but lost it after.
It's going to feel so much better not to see long strands of hair coming out. I swear. And you have a really nicely shaped head!
xoxo
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Thanks for the updates and photos. That's a lovely noggin' you have, Petey!
And Agatha, thanks for preparing us for the ice on hands and feet. Congrats on completing Round #4. I hope the next several days treat you well. I'm so envious that you don't need to see those red needles again!
Eight - You've completed #4 today, right? Cheering for you! Sorry to hear that the emotions have been raw. I went through an awful period of depression last week. I shudder to think that I might experience it again after the next 2 rounds. My menstrual cycle got triggered early with Round #1 but never really did anything. I really hope it just stays away til I'm done with AC at the very least. Chemopause... for good?
Sara, good to hear that you were feeling up to a walk today. I hope it was beautiful.
After a week of absolute fatigue and needing to sleep almost all the time or just barely able to move myself from my bed to the couch, I'm finally feeling almost normal. I was even able to get a few hours of work done today, working remotely on the computer. Then I had an amazing acupuncture appointment after my oncologist appointment, another Granix shot, and a brisk walk around the hospital complex in the gloom and cold. But here I am, third night in a row of being wide awake. Last night, I took an Ativan at 3am finally night so that I could get some sleep. I feel like I'm fighting off some cold symptoms (or are they SEs? - sniffles, achy in the ear, canker sore flaring leading to the ear discomfort...normally a precursor to a cold, but now is it just a mouth sore?). Think I'm going to cave and take another Ativan tonight. I really need to reorder the L-Theanine & Melatonin solution I discovered at a natural food show in September. blah blah blah....
good night my friends, my sisters. my prayers are with you/us all.
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Checking in after a long day. It's Day 4 after my last chemo, and my last day on steroids, thank God. I forgot to take my steroids early yesterday and I paid the price. Fell asleep at 9:30pm but woke up at 1:30am and that was all she wrote. At 11am, I had a luncheon scheduled with former co-workers and decided to just go ahead and go because I didn't want to stay home and nap, and further sabotage another night of sleep.
Anyway, I just got back at 4pm and I'm exhausted. I just took my final round of steroids for this cycle, and cut it to a half dose, with the blessing of my NP, to see if I can stave off nausea without sacrificing sleep. I hope it doesn't backfire on me.
Agatha, I've had the same symptoms as you for a bit. I've had a perpetual runny nose and occasional earaches as well. No canker sores, though, and no fever. I figure it's an SE because it never seems to get worse or better. Thanks for sharing your ice pictures. I'll be doing the same. I'm also glad to see that you raised your feet. I think that this will help because if you put them down, it seems to me that the chemo can pool in your feet easier.
Petey, sorry about losing your beautiful long hair. I know it's devastating. If it's any consolation, you do get used to it after a bit, especially after you realize that everyone is so busy with their lives that they don't even really notice. While I've never gone bald in public like some women, I have a feeling I'll be ditching my caps just as soon as I get a good inch of hair back.
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Brandy, welcome and it does indeed suck about our hair. If you can stick it out, it's ok to wait. I couldn't stand how much my scalp just hurt when my hair was coming out by the handfuls so I just went for it. It felt so much better afterwards. Just do what feel right for you.
Lisa, OMG that wig story. It just makes me so mad how these places take your order, take your money, and then maybe decide to tell you what you've ordered is out of stock. AS IF they don't already know. Bastards. That happened with one of those wigs I returned. Ordered 2, got a confirmation, then 2 days later got a shipment notice on 1 and noticed in there the other said backordered for 2 months. 2 months!! If I hadn't noticed that they would not have told me otherwise. Tip for online wig stores... call to order. They can't lie to you real time.
Eight, I'm feeling blue too randomly so just let it happen. Sometimes you just need a cry and that's ok. Mine are so random and frequent I don't even think twice about it anymore.
Julz, you'e such a warrior. If you haven't yet, reach out to Sharsheret.org. They have a ton of resources for BRCA+ women and even though I'm not one myself I've found great comfort and spectacular support with them. They'll send you a great feel good kit and a cookbook too. I recommend this for everyone!
Oh and I did get one of my wigs in. I'm still feeling like crap from chemo#3 so have not put it on yet but should in a day or two. It looks good on the foam head so hopefully that bodes well for me too.
I hope everyone is having a good weekend! HUGS!!
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It's 5am and my experiment on cutting back my steroid dose in half was somewhat successful. I slept from 6:30pm to 10:30pm and then couldn't sleep so started reading. At midnight, I took an Ativan, and I finally fell asleep around 12:30am. Woke up at 4:30am for good, so all in all, 8 hours of sleep. Better than 3 or 4, and no nausea, which is what my NP feared. I'm hopefully done with steroids now as I don't believe I have to take any with Taxol. Small victories!
Anyway, during one of the waking spells, started poking around in my problematic breast. Discovered new lumps to worry about, even though my NP also felt them and told me that it was normal breast tissue. I'm going to ask again for an Ultrasound to confirm that not only is my one known tumor shrinking or gone, but that new breakthrough tumors aren't developing. I know I'm probably being ridiculous, but I need my peace of mind, even if I have to pay out of pocket for it. If in the unlikely event that the chemo is actually allowing other tumors to grow, then I'd like to get rid of the breast now and finish up chemo after. And if all is really well, I'm convinced that I'll have to get a DX, cause it's hell worrying about tumors all the time!
Happy Sunday everyone. Wishing you all an SE-free day!
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Hi ladies, haven't been on in a while. Busy week here with the kids. For anyone moving onto dose dense taxol after AC I'm very hopeful it'll be an easier ride. Had my first dose 12 days ago. Fine on day 1, tired day 2, day 3 had to stay in bed due to fatigue and bone pain. But then started to feel better on day 4. No nausea on this one. Toenails darkening faster though so I'm rubbing oil into them. I'm back unwed for second dose.
I still get steroids with dd taxol. 20mg of dexa at midnight before infusion, another 20mg at 6am day of infusion. Lot of steroids in a short space of time but apparently its to reduce risk of allergic reaction as its a lot of taxol going in on the dd regime.
I still find myself suffering from insomnia, and still get a massive mood slump a few days after infusion. Its awful. I'm no fun to be around and end up feeling so guilty for being an emotional roller coaster
I find myself getting irritated when my kids are in whine mode too. Then I feel guilty. Then I feel tired. My daughter has a virus I think, so praying my WBC is OK for wed. I'm snuffly too, sore nose, bit if a cough. Sometimes I'm not sure what's the chemo and what's me!
Also, starting to loose eyebrows, anyone here got any good YouTube tutorials on how to paint them in? I look a bit like I drew worms on my face. I'm not a make up girl lol
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