Chemo Starting August 2018
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mactaz - Sorry - a chemo brain moment! I think because of the skin issues you’re battling, i limped you in with the rads group.
KWilli - thanks
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Wow Kwilli you hair is coming in fast and dark!
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wanderweg hair looks great, you have a lot more than I do. My husband says it's coming back in but not as much on the top yet. It comes in patches in different areas, kind of on a weird grow pattern. Plus my hair has always been more on the blonde to dish water blonde side, now it looks dark. LOL
My surgery is right around the corner, Thursday morning I am first. have to be in Atlanta by 5:00am. Nerves are really kicking in. Thank you all for the great support.
Mactaz, I lost eyebrows, eyelashes, hair past my waist, you name it. LOL And all those things are coming back very slowly.
Do you still have drains? I have to go to work, I will check back later girls. take care and may we all wake up with hair. xoxoxo
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Hughope - me too.... from dishwater blonde (assisted with a few highlights) to very dark blackish hair w/ grey. I think it's described as 'iron grey.'
My son had a teacher whose hair came back RED so anything can happen!
Also it is baby fine, flyaway and untameable. The sides lay flat and the top is growing straight up like a fright wig!
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OMG, you two have the same hair as me. I was a dishwater blond also and now it is coming in dark or gray. Also the top is coming in slower than the sides, sticks straight up on top and flat on sides. What a coinkydink.Hughope1, I did get my drains out, thank goodness. Everything is going pretty well, will have my third expansion on Wednesday. I anticipate my implant surgery will be sometime end of March or early April. Good luck with your surgery, will be thinking of you.
My rash has disappeared, maybe the Benadryl helped, thanks SB for the suggestion. Met with my OC and he is starting me on the anastrozole since I had hormone positive breast cancer. I’m dreading this, so many people have issues taking the aromatase inhibitors, but I will persevere. Im in a much better place today mentally, thanks all for your continued support.
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benji69, hughope1: as you’re wheeled into the damn cold operating room, know that we’re all there, holding your hand. I found that to be the most alone I have been this entire process. It was unnerving. Be sure to feel the warmth we all wrap you in. Much love, ladies!
I had a massive amount of curly shoulder length hair. I’m thinking its coming in straight. It also looks like a dark grey streaked with silver. So weird!
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We're quadruplets now!!
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benji - I’ve been thinking about you today and hope everything went well and that you are resting.
My hair was medium brown, fine and straight, with a fair amount of gray in it. It seems much darker now and no gray really. Still seems very straight, and is remarkably even.My head feels like a baby animal.
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Benji - I was thinking all day yesterday that it was the 19th. So today, sending good thoughts to guide your surgeon’s hands!
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thank you all for the input, I loved reading about how all of our hair has taken on so many changes.
Got to go back to work, write more later. xoxoxo0 -
I’m home and feel great, even cured my painful stiff neck. Obviously still under the influence of anesthesia but relieved and relaxed for now. I did have the wire and dye, lumpectomy and axillary nodes removed, one drain. I guess now I wait for pathology. I was worried they would postpone because I couldn’t move my head. The hospital bed made me so comfortable my husband bought me an adjustable bed which was delivered as we were pulling into the driveway from surgery. A great 70th birthday present.
Thank you so much for your kind good thoughts. Another step finished
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benji69, so glad you are home and recuperating. I am keeping you in my thoughts and sending you good vibes for a great path report. Take care
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benji—you're in my thoughts for a quick recovery. I'm glad you got a fancy bed. Sounds like perfect timing for the delivery. Big hug
Kwilli—did you meet with the RO? What's the plan?
Santabarbarian—I will look for that product. Thank you!
My hair was beachy waves/loose curls down my back and dark blonde prior to this. Now it's dark gray and straight with some crazy white hairs. Still thin in the bangs. Idk. I think it looks weird. Let's just say it's in the 'transitional phase.
I finished my 21 rad. (Into week 5). Thank goodness it wasn't the skin bolus day. My chest was reddened and angry all weekend. But, didn't bother me other than a bit of very minor itching. It looks better now. I spoke to the rad tech and she said that my skin has held up great. She won't even change my dingy stickers because she doesn't want to piss my skin off at all. Skin bolus day tomorrow and I meet with the RO. I'm curious about her opinion on the skin.
Speaking with the rad techs today they said that exercise really helps to fight the rad induced fatigue. They're still surprised I'm running 5 days a week but I need to for my mental clarity. I've heard other people feel awful through rads and can't work. So, I'm going to continue to exercise my ass off. Makes me a nicer person. However, my ass is sad, droopy, and wrinkled. I look ancient from behind.
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MACTAZ—If you try the AI and if it sucks can you try Tamoxifen? Or is that off the table?
Hughope—glad you’re doing well and back at work.
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hey all!
MGJ: I’m SUPER impressed your sad, droopy ass can run so much!! I swear, I run 3-4 min within my 30 min walk and I’m dusted. Yay you!
Benji69: so happy you’re home and feeling good. Take your pain meds, enjoy some rest. You deserve it.
I met with the RO today. I fall into a “grey area” because I’m TN and had neoadjuvant chemo and surgery after and didn’t have pcr. There is a (maybe) 5-15% chance of locoregional recurrence, they can (maybe) reduce that by 1/2. When I look at the risks of radiation itself, I’m not convinced it’s worth it and either is my RO. He’s sending my case to a board for review so I have better information to make a decision. Still waiting for MO to get back to me with pathology results from extra testing. I’m back to not knowing anything and it’s FRUSTRATING as hell!
In the meantime, I’m going to enjoy my good energy and thank my lucky stars it’s not worse!
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KWilli, can you get Proton rads? Maybe that would make it feel less risky?
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MGJ, keep it up girl, I can’t run anymore but walk 4 miles a day. I have steadily increased my speed so I’m feeling good. I can’t wait until I can finally start back on my stretching and strength routine, although I don’t think it will help my saggy skin. Hoping your remaining rads go smoothly. My OC prefers AI for me since there was signs that cancer had gotten to nodes, although zapped by chemo. He said he will go through all AI drugs first and hopefully can tolerate one of them. If not, he would consider tomoxifen.
Kiwilli, it’s a tough decision, hoping you get good news from your latest path.
Thinking of you all,
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SB: proton radiation isn’t available in Canada. It’s still in clinical trial stage.
I hope things are going well for everyone!
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Kwilli, just a thought... there is a clinical trial for Proton rads after treatment thats not randomized. I believe it is at Univeristy of Maryland (UMD); if not it's at University of Pennsylvania. If you do a clinical trial I believe there is no out of pocket cost, but I think you do have to go back for the followups for 5 years. The trial I saw was not randomized.... it was observational. So everyone gets the protons and then they follow you for stats.
My MO told me lumpectomy + rads and mastectomy w/o rads have equal survival with TNBC, so I guess that's what your MO is saying too. Even w pCR there is a 10% chance of locoregional in 3 years. Sounds about the same as where you are. I am equally concerned as you about potential over-treatment. The other consideration is maxing out your rads now, vs. having rads in the arsenal if you were to get a recurrence in the future. That was part of my thinking too re Mx. There's something to be said for 'saving' a treatment that may be needed later. If I recur, I could get a Mx.
My docs essentially insisted on rads, since I just had a lumpectomy-- all the pCR stats are based on the women having had rads too if they did not get a MX.
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Benji - Glad the surgery went well and you're home. I didn't realize they'd do it as a day surgery.
MGJ - I'm thoroughly impressed by how much you run! Did you have reconstruction? These bags o'silicone are heavy - I don't think I even can run any more. I miss my old smushy breasts! I think it's walking from here on out for me.
MACTAZ - Did you have micromets? I worry about the cells that might have slipped out in the blood stream, but am hoping the chemo and tamoxifen are doing their job.
KWilli - That does sound super frustrating. I hope you and your onc are able to settle on a plan that feels right for you.
santab - That's what I was told, too. When I was making the surgery decision, my surgeon said it was either a MX or a lumpectomy and rads. She told me a lumpectomy without rads was a "crummy" option and not acceptable. She said I'd have a very slightly less chance of local recurrence with a MX, but not enough for her to encourage one over the other. And equal distance recurrence risk.
hughope - You're up tomorrow, right? Sending good thoughts!
So obviously everyone here opted for chemo. I sometimes visit other threads and am a little flabbergasted by how anti-chemo the sentiment runs at times. I fully support people making the decision not to do chemo if it doesn't feel right for their situation, but I almost get the sense that some folks feel like it's a cowardly choice or a choice forced on us by the evil cancer empire. I find it comforting here to not feel a pressure to justify it.
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wanderweg, I didn’t have micromets but they found scarring in one of the nodes. They believe cells had spread but the chemo took care of them. My concern was what if some slipped by, OC said I had such a good result there is a good chance that it killed anything that might have roamed elsewhere. No proof but finishing H&P treatments and taking AI is best to help odds. I also had a strange growth in brain, they couldn’t identify it, so I have to have regular MRI’s of brain for awhile to ensure that it isn’t changing.
I do understand you comment on chemo, I have seen some of those discussions on other threads.
Hughope1, will be thinking of you.
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I am on 8/28 of my rads right now. Still entirely comfortable, but pink. I found a great recipe online for skin care during rads. I think it's working well. I did not start it early, as I should have, but rather began on about rads #5 when the aquaphor approach was not preventing me rapidly pinking up.
**You need to find NO alcohol, pure/organic** versions of the following, and begin two weeks prior to rads and keep going two weeks after.
1. pure Calendula extract (could only find it infused in olive oil - Herb Pharm.) 2. pure aloe vera gel (Mountain Rose Herbs) 3. organic Hemp or cocoanut oil (Hemp: mountain Rose Herbs) 4. organic Lavender extract (Mountain Rose Herbs). The hemp or coconut oil is mixed w a little bit of the lavender, 2-3 drops of lavender in one teaspoon of oil.
You put these things on sequentially: The calendula extract is meant to go first. Let it soak in. Then aloe, let it soak in. Then apply the help oil w/ lavender in it to seal it all in. But I am doing the aloe first, since my calendula is in olive oil and the aloe is more watery I put it first so it can absorb. But if you find a watery pure calendula, do it first. Then I put the calendula oil, then hemp oil mixture. I am doing some calendula oil in between as well.)
Do this several times a day. I began this last week and my pink is lessening. No pain, no swelling - though my incision scars are a bit tender.
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Thanks for the information on skin care. Rads are next. Surgery Tuesday, walked 2.5 miles yesterday. I feel surprisingly good, probably relieved. I love my drain. I wouldn’t want all that stuff to build up inside. This is my home site for getting information and encouragement . I would have been so much in the dark without your help
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MACTAZ - Oh, that makes sense. The strange growth makes me wonder how many of us would find unusual things if we had whole-body scans before cancer. My son had an MRI for a Chiari malformation and just by chance, they found a (benign) cyst on his pineal gland.
Santabarbarian- so glad you’ve found something to help lessen the skin impact of the rads!
Benji - Good for you on th long walk! I felt about my drains the way I felt about my port. Glad to have them for what they did for me, but so eager to get them out again
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Wanderweg, I agree and is exactly what my Onc said about tests but he felt necessary because I was having some strange vision problems during chemo. Ive had so many test the last 8 months I’m sure my insides are lit up like Christmas treefrom all the radiation and special chems.
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Mactaz, I hope it's a nothing but very wise to be careful. So many stories on this site of docs not taking things seriously enough! I think the nerve-damage aspect of chemo can cause weird visual stuff; after all you have an ocular nerve. I used to suffer from migraines, and once I had an ocular migraine. No pain, but it looked like I was peering through a weird prism of some kind and there was a blank place in my visual field. This was years ago but whoa, very scary to experience.
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I guess “they” were right about the lymph nodes. 5 of 12 were malignant.
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Benji - Damn! I'm so sorry to hear that. What's next?
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benji, that sucks. I know you will be doing rads, are they suggesting anything further
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Benji—Shit. I’m so sorry. Our nodes did what they were supposed to do. Caught those nasty cells. You will have rads now, correct? I’m sorry if I missed that.
I just got my hands on my surgery report from June yesterday. I was a mess. I had awful nodes, fused together with tumor. Macromets. Lymphovascular invasion. On and on. So much tumor down to my chest wall that my BS had to lengthen my incisions in both directions to open me up further. Wtf. It seems like a throat punch and brings back all of that anxiety I had back then. F this breast cancer BS (that’s bullshit).I’m ranting but reading that op report just fired me up and really got me pissed.
Wander—I am not getting recon/implants again. I had implants for 11 years prior to BC diagnosis. I’m not a candidate for any lat or transverse abdominus flap. So I’m running with no boobie on one side and a flapjack titty on the other. I never wear bras or anything. When I ran with my old silicone jugs I had to wear crazy compression or the girls would be everywhere.
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