Starting Chemo in February 2016?
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Hi Reflect,
I am also getting AC and want to tell you that, although I had a fairly hard time with round 1-- at least until Day 11, round 2 has been A LOT better. So don't assume what you have experienced is going to be how it goes or only get worse. I think the beginning is especially hard - one reason being that if you read these boards you know just about everything that can go wrong. Hang in there!
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Hi Reflect,
I am also getting AC and want to tell you that, although I had a fairly hard time with round 1-- at least until Day 11, round 2 has been A LOT better. So don't assume what you have experienced is going to be how it goes or only get worse. I think the beginning is especially hard - one reason being that if you read these boards you know just about everything that can go wrong. Hang in there!
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chambo - thank you. Will try Claritin.
Deaconlady- lips...so true.
Frances - we are here for you! I know what you mean. My daughter seeing me sick in bed is so hard for her. I cover up my picc line sometimes for her too.
Praline - great! I have oodles of gold bond cream and powder. Will use!
Myraknits. Thinking of you today.
asher - thank you. I wish for you to go, however, please mind your WBC count. Last weekend I did not travel. I waited on texts and calls during competition. I went this week twice as they were just up the street. Wednesday night I saw my chemo nurse! Her daughter was competing against mine. She was happy to see me out.
imani - my MO gave me that elixir to make (salt, baking soda, water) and it helps but now I want magic mouthwash. ;)There is also a great gargle by prescription I had for a sore throat last year. I can't remember what it was though. I think I may ask for that.
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chambo - thank you. Will try Claritin.
Deaconlady- lips...so true.
Frances - we are here for you! I know what you mean. My daughter seeing me sick in bed is so hard for her. I cover up my picc line sometimes for her too.
Praline - great! I have oodles of gold bond cream and powder. Will use!
Myraknits. Thinking of you today.
asher - thank you. I wish for you to go, however, please mind your WBC count. Last weekend I did not travel. I waited on texts and calls during competition. I went this week twice as they were just up the street. Wednesday night I saw my chemo nurse! Her daughter was competing against mine. She was happy to see me out.
imani - my MO gave me that elixir to make (salt, baking soda, water) and it helps but now I want magic mouthwash. ;)There is also a great gargle by prescription I had for a sore throat last year. I can't remember what it was though. I think I may ask for that.
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I miscalculated. I'm day 15.
LovesToFly - my "Brazilian" started several days ago. 😂
My head hurts, not itchy now. The crown feels sunburned. So...I'm going for shave today or tomorrow. I feel it will be empowering and bonding if my husband did it in our home.
Good news. My compression spinal fracture and hip pain isn't so bad the last little bit. After the cancer centre appointment with MO and RO we have been so worried about mets. Now, I walk around with ease and my weight loss has turned to weight gain. Okay, I loathe the weight gain but will take it....for now
Blessings battlers!
Piper
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Good Morning Ladies!
I had my third treatment Wednesday. Slept very well Wednesday night, rested Thursday and had a good nights sleep last night. This is all good news, as I have had a hard time sleeping. I have a constant mild headache for the first 3-4 days after treatment, but it could be worse. 'C' is a constant battle, but Senna S everyday helps. I do what I can and rest when I need too. This has been extremely hard to give into, but a necessary for now.
Dgail620- I have the same issue with my nose. It seems pretty consistent. I just carry tissues and go with it. Also, the white scalp! Lol I could light up a dark night. Lol Loving my fondness for hats and scarfs. A fashion I would have never tried without a reason.....
One more treatment in this round and then I move to the weekly Taxol for 12 weeks. A little nervous to switch, each medication seems to have its own surprises. Lol
Take care all,
Elizabeth Vazquez
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reflect, serenity and Imani- my first week after AC was tough all around. Starting my day off with a banana helped. And then I followed with apples and almond butter and craved stir fry veggies and brown rice. It seemed to keep both D and constipation away. The headaches from the steroids were brutal and Prilosec was a huge help for my stomach. But as Chambo said, it does get better.
I'm exhausted today! I look exhausted. I traveled 4 hours Wednesday, stood in the cold for 2.5 hours watching lacrosse, didn't sleep well and then drove home 4 hours. And of course I stayed up last night to watch that republican circus debate. I havent resembled a true chemo patient until today!!
Heading into my second chemo infusion Tuesday... I've heard both sides that it gets better/worse with each one.
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all done! #baldrockstar #fucancer
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yay Piper!! You look great😎💪🏻💗
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Piper! You are badass! I need "before" photos asap before there isn't any before left. I've just started itching, made appt for wig--MO says I need it to keep the strangers from commenting about their family/friend horror stories--next week, assembling a posse to assist.
But I personally think the bald look is best. My dd is going to henna tattoo, I'd better get her practicing right? Have you seen those naughty words coloring books? Lovely, elaborate, swears with flourishes. Maybe I'll do that.
Or....since I'm in a bit of rage right now (my R breast has been followed since at least 2007 for suspicious calcs/architectural distortions in the same locations. U/S follow ups never showed anything, but never got MRI until I asked for it in January 2016 and..surprise, 2 cancers right there in the same spots.) SO, since I'm in a rage, maybe I'll call out all the misses my PCP, radiologists, and hospital made. In henna tattoos on my bald head. In 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, Baystate Franklin failed to adequately follow up on suspicious findings on my mammograms. Occasional ultrasound follow ups showed nothing. I was never referred for MRI screening despite being high risk for cancer and having extremely dense breasts. I was never referred to a breast center even though there is one in their very own Baystate Network. When I received an MRI at my request two cancers were found in the right breast in the locations they had been "following" for the past nine years. At this time cancer was also found in two axillary nodes.
I'll have to be pithier. But let me ask you: why does a hospital say they aren't going to charge you for tests that need to be repeated? Because they feel bad for you? I don't think so.
Sorry, I should have found a rage forum. I just cried for the first time today since this all started 12/18. Because they called to cancel the biopsy of my L breast because they looked again at U/S and MRI and they don't really think there's anything there. Excuse me if I lack confidence. He said, well anyway you wanted a BMX. (WTF?) But maybe I'm rethinking BMX in light of lymphedema risks.
I have lost confidence and think I need a whole new team.
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i'm sorry you went through that, it must be horrifying to realize that this has been happening for so long and wasn't cut. I'm not exactly understanding why a bilateral mastectomy would change your lymphedema risk? Either way won't the lymph nodes be removed?
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piper- you rock!
Reflect (((hugs)) I'm so sorry.
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Yes, good question right. If I have a BMX doesn't that put me at risk on both sides? If I had a biopsy of the left, and it was negative, they could leave the left side alone couldn't they? No Mx, no nodes? But no biopsy of L leaves me with big Q?
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Reflect: if there is only one side that they think was affected, they will probably only remove the nodes on that side, the other side's mastectomy will be considered prophylactic. You may be able to talk them into removing nodes on both sides to check, but really node removal has nothing to do with the rest of the surgery. Whether or not you have nodes removed and are therefore at them for lymphodema has to do with what nodes they remove to check. I only had cancer on one side, so they removed the lump, and two lymph nodes from the same side. Therefore I am at lymphedema risk on that side. If I had chosen to have a mastectomy instead of lumpectomy, they still would've taken the two lymph nodes to check andmy lymphedema risk would be the exact same.
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Thanks LTF, so...a mastectomy without any nodes removed does not put me at risk for lymphedema? The risk is only related to node removal, and not to mastectomy?
I will have to have MX for right because my bc is multifocal, and we already know 2 nodes are + from FNA.
I just wrote two whole other rant but deleted them. I am going to to pull highlights from my reports going back to 2007, however, and write a letter to all the providers who could have done something different, to see if some change in protocol could be achieved, for the next woman.
Radiologist called MO and BS, then me. Radiologist said, well, your breasts are very difficult to read. So, that means, what? Oh, well?
I'll talk to MO. And probably look for a second opinion/switch teams & hospitals. Obviously, I'll hope the chemo I've already begun is still recommended (seems standard).
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"Thanks LTF, so...a mastectomy without any nodes removed does not put me at risk for lymphedema? The risk is only related to node removal, and not to mastectomy?"
Yup!!!! They will generally remove nodes from the side where the cancer is, not the other side because it's not likely to travel that far. Even if you have a bmx, they will only remove nodes from the cancer side. really that's probably what you want if you have no reason to think there's cancer on the other side, so that you will still have someone good side for bloodwork, IVs, blood pressure, etc. You should never have anything done on the side that loses nodes again (which is why I refer to my left arm affectionately as "the pincushion"). Obviously if people lose on both sides that either have to risk it and minimize risk of infection, or use other body parts, but I'm sure it's quite inconvenient and best avoided if safe.
Definitely think you should follow up with regards to the missed diagnosis!
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reflect and lovestofly,
I had bilateral mastectomy end of January. Right breast had cancer, left breast was prophylactic.
They removed the sentinel lymph node from BOTH sides, in my case, and explained that they needed to do it this way? My understanding was that they needed to sample the nodes on each side.
Sending lots of healing thoughts and support. I'm starting chemo next week
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Reflect - oooohhh I'd be raging too. Using the phrase "borders on malpractice" should get you some response when you write to them all.
Piper - love the shave. After dealing with 1/4" for three days, I'm ready to Bic this b*tch
- I'm tired of the little shards of hair poking my poor headItchy hands are still not resolved, but at least now I have my icing mittens ready to go for next week. At the very least I can try not to compound the 1st round's problem with more chemo from round 2 on Wednesday.
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MLP3- The banana trick worked! Great advice. Thanks.
Chambo- I hope those icy mittens do it!
Reflect- I agree, there really seems like there could be some malpractice there, regardless if your "breasts are hard to read" or not. It sounds like there is some excellent info from LTF here. I'm so glad there are others to help us through this craziness. ((Hugs)
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Piper, you are rockin it! Adorable!
I went for round 2 today...fairly uneventful but I slept for 4 hours after. I'm pretty sure it was the Benadryl. I used cold packs for my hands, cold pack socks for my feet and chewed ice chips during Taxotere to stave off any neuropathy. It's one of the few SEs I didn't have the first round so I'd like to keep it that way. I'm fully armed with a variety of meds so when ANY symptoms show up, I can treat them immediately as the doctor advised. Learned my lesson first round!
Onward
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MLP3, asher, chambo, Myraknits - thank you. I love it. I don't mind going bald. My daughter, however, requests I don't. She thinks I'm beautiful and is not embarrassed. She told me she doesn't want her friends telling her how sorry they are because it makes her feel worse and worry. So cerebral for such a young age.
Reflect-thank you. I feel horribly for you and your recent experience. I don't blame you one bit for feeling rage. We are told to advocate for ourselves. We know our own bodies! Do what is right for you. You have so much support here. If it's a new team you need, do it. Big hugs.
Myraknits- keep well after round 2. ❤️
Piper
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HR winter that's interesting. I'm on quite a few boards and also know quite a few survivors, pretty well all of them have only had nodes removed from one side, unless they actually had breast cancer on both sides. I know one woman who had nodes taken from both sides, she only had cancer on one side but was very nervous, and pretty well had to beg her surgeon to do it. Obviously though, every situation is different and every surgeon has a different protocol. Where do you get your blood work and blood pressure and stuff like that done?
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Asher- glad the bananas worked!
Reflect- my first reaction is to get a new team. What a mess! But you can get through it, get a new team that's solid and not condescending and you have us here;)
Piper- my son prefers me with the short buzz! My daughters friends say I look "bad ass". I'll take it! But I still wear the wig with a beanie so I don't shock too many people.
Chambo- we are a day apart in our treatments... Do you still have the little shards on your head?
I'm 18 days out of my first treatment, buzzed my head and I'm still hanging onto the very short buzz...But I'm losing my lady hairs! My brows look to be thinning... Lashes too. Has anyone held onto the head hair long like mine on AC?
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I'm not on A but I'm on C. Exactly 2 months since my first chemo, three cycles in, and I've still got a lot of stubble on my very buzzed head. Sometimes I'm curious what it would look like if I had not buzzed, I assume it would be very thin and patching, but it still surprising how much stubble is there and actually growing ( I had it buzzed almost completely smooth about two weeks ago, and there is stubble again. My head feels like my legs would normally feel after a week without shaving).
I have no hair below the belt, and haven't in a long time. Underarms too.
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As for my bald head and my kids (7 and 12) they say they like it. I usually do wear a hat or scarf when I go out, but if I start getting hot I take it off. My kids have said they do not mind and they are used to seeing me like this anyway. Tried wearing wigs so many times, but I'm just not comfortable!
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Love you all, and I have officially climbed off the ledge. Rage packed away in the rage box. Back to regularly scheduled programming:
Itchy scalp and back.
Other than that, I actually feel almost normal. Round 1, Day 9. Sound about right? I am really looking forward to doing something besides managing SEs and sleeping and attempting to go to work! Whooo Hoo.
Plan: Clean my room. Set up sewing space for chemo caps and dd's cosplay. File taxes. Deal with papers (rads reports, path reports, notes from appts, bills, insurance papers OMG).
OK so not all that.
But something.
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Happy Saturday
All is well and I almost feel normal besides a little dizzy. I had a low grade fever for three days but it never went to the dreaded 100.4 degrees.
Anybody on TC and managed not to get the Neulasta shot? I did not get for the first infusion and I am wondering if its possible to keep my white blood count high enough to skip it again next round.
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So I took all the stubble off today - I got tired of the little daggers jabbing my head. Whoa it feels so weird both to touch and when things touch my scalp where it has never really felt stuff before. Basically I had serious male pattern baldness going on with what stubble was left after the super short buzz, so I just helped it out the rest of the way. Now at least the pillow won't feel like it is velcro'd to my head...lol.
It's a little shocking when you Bic the hair off...I just see my dad's bald head looking back at me...lol. Somehow the stubble still gives a semblance of hair, but the last little bits gone ...just weird.
My eyebrows and eyelashes seem to be standing firm so far. Underarms are bare, legs have a little stubble after about a week, but it's thin. Ladie parts are pretty thin but stubbornly clinging to life there...lol.
On the itchy hand front - it seems to be calming down a little - or maybe the periods of intense itching are fewer and farther between. I do feel an eczema like thickening of raised bumps along the outer edges and sides of the itchiest fingers (first and pinky)...almost like permanent baby hives. I've had one or two tiny blisters, and my knuckles are definitely swollen a little. There is some tingling. I'm not sure if this is stage one of the dreaded neuropathy or stage one of Hand and Foot syndrome...but I am pretty sure it is one or the other. I'm going to be icing like crazy on Wednesday (my next infusion) to try to keep it from getting worse.
I started getting the "So, you're sick?" responses at work this week as I went to hat/scarf mode. Apparently everyone thought the longer buzz cut was just me being hair-adventurous, but the 2nd close buzz and scarves are the tell-tale signs. I've become "cancer girl" now. Ugh. I seriously want a t-shirt that says, "Baldness - it's the cure, not the cancer" - just to help people understand that the hairloss is actually a part of treatment not illness. In the meantime, I'm going to a party tonight. Will be seeing a bunch of people who haven't seen me de-haired. I've got a shirt to wear that says, "I'm too sexy for my hair". That plus a scarf. Deal with it,people :-)
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hi everyone - Reflect, I'm glad you are feeling better, but I'm sure no one blames you one but if you have more rage - totally understandable, and I agree with what many have said in that I hope you find a new team that might be more supportive and proactive. Good luck!
Lovestofly, I just had the one node taken from each side - the sentinel node, which they identified with a special dye that was injected the night before surgery. I think because only one node was removed, I'm still able to have blood work and blood pressure checks etc.
so much information to learn about all of this - I feel we could each take several full length classes on all aspects of testament and still there's more to learn. It can be overwhelming!
Glad to hear about everyone's experiences with chemo thus far -
Myraknits, where did you purchase your cold booties and mits?
Xo
Heidi
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that sounds perfectly normal reflect! I can actually countdown to when I feel like myself. Around day 7 I start feeling about 70% normal, from day 9 until my next cycle I am almost completely normal! I little more easily tired out, a little bit less stamina, but pretty much myself! I hope the same happens for you and you just start feeling better and better ( although it does make it hard to go back, when you're feeling like yourself again and have to start all over. I am going for cycle 4/6on Tuesday, and so not looking forward to it!)
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