Starting Chemo in November 2017
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Blair and rljes Yes cancer treatments are so barbaric: cut, poison, burn. I hope it's better for the next few generations. I dream of the day when a blood test tells us which patients can safely forego chemotherapy. We just aren't there yet. I have a friend that has had lung cancer three times. She is so tough about it and is now 5 years+ cancer free.
Latisse is a prescription. You can ask your Dr. for a script for the generic Lumigan which I believe insurance might cover as it's used for glaucoma.
I find I have hair envy. I'm not proud of this but when I go to the grocery store or the hospital for rads I people watch and I notice all the normal hair. You know the hair that doesn't scream CHEMO! I can't help it I get envious. I would like to rip it off their heads and magically transplant it to mine. Don't even get me started when someone has pretty hair, lol. Obviously I need to work on this hair issue thing.
I hope everyone feels better soon. Hugs and healing thoughts to all of you.
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Rljes - Accuboost is the manufacture name to a more concentrated boost breast treatment. A lot of people just call them boosts. It’s a smaller machine compared to the big TrueBeam machine. You sit in a chair with your breast smashed horizontally like when having a mammogram between clear plates. They install these D-shaped, or round shaped applicators that guide the radiation beams through them. A physicist hooks these tiny tubes to the applicators from the radiation source (looks like a robot). It lasts about 5 minutes, then they smash you vertically and treat you again. It takes about 25 minutes. It doesn’t hurt and I have had no irritation from it at all. (I had 8 treatments) The applicators are above and below you in the horizontal position, then are left and right of your breast in the vertical position. Here’s a link about it. I was told my Accuboost treatments were more concentrated in the tumor cavity,and that the TrueBeam radiates the whole breast.
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That's interesting. I've been told my boosts will be on the same machine as my whole breast.
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Kivans - maybe there are other machines that do a type of boost. I just know of Accuboost. Let us know what happens
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Rljes - Like herceptin, perjeta is a HER2 inhibitor. Until recently, it has been used only for neoadjuvant treatment and for advanced stages. Clinical trials showed that, in combination with herceptin, there is a benefit to using perjeta for HER2+ early stage and smaller tumors, and it was literally approved by the National Comprehensive Cancer Network (NCCN) for use for expanded usage this January. My oncologist added it to my treatment plan in February, but of course, we had to wait for insurance to approve it. (eye-rolling! - I hate the insurance game.) It was added to my March 1 treatment, and will continue with the herceptin after chemo has ended.
You may want to ask your oncologist about it.
I hope that helps!
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rljes - I received Perjeta and Herceptin as part of my chemo cocktail: TCHP. I'd originally been told that I'd be receiving Herceptin only PFC, but my MO recently told me about the new approval Meow mentions above. So I will be getting both Herceptin and Perjeta in my PFC infusions, on the same every 3 week schedule as my chemo was.
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It's nice to see the strides they've made lately in treating HER+.
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Happy Sunday...
I'm trying to catch up for the past few days. March Madness gets in the way of my life! My favorite time of year. I'm in a pool. As of this morning, I'm in 1st place. That could go downhill in a heartbeat, but it's fun!!
Mindy...I will check out those supplements for the neuropathy. My onco said he could drop my dose of Taxol if it got too bad, but he really doesn't want to - for obvious reasons.
SDK...I have 5 Taxol infusions left and I can't wait for them to be over. Oh, I can relate to your eyebrows - or lack thereof!
Iris...I've seen a commercial for some kind of eyebrow tattoo product. I can't remember who makes it, but it's supposed to last for two weeks. I might check it out.
Meow...So sorry you're having such a rough time. Hope the echo yields good results.
Rljes...You are not alone...I've never had a professional manicure or pedicure....never had the desire.
Kivans...The neuropathy is the only thing bothering me, but it is "really" bothering me. I bought packets of Bio Freeze gel and it hurts to even rub it on my foot - the upper part is painful. I'm going to go out today and get the spray Bio Freeze. I tried the Aspercreme/Lidocaine and no different than the Bio Freeze as for relief. I was told to mix Vicks with the Aspercreme...that will be my next trick! I will say, the Bio Freeze is more soothing.
Blair...Glad your back pain seems to be easing up and sounds like you're tolerating the radiation quite well.
Well, it will be another day of watching the "madness" for me.....Go Xavier and UC. Hope all of you have a great day!
Hope
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Nonahope it sounds like you are hanging in there. I'm glad you only have 5 taxol infusions left. I hope you find a solution for the neuropathy. Do people cool their hands/feet during taxol treatments do help diminish neuropathy? I know they do with the TC treatments.
You are number 1 in your pool! Good going!
Have a great Sunday. May your teams prevail!
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Kivans....I've never seen anyone icing their feet or hands when I'm at chemo. I would find that very uncomfortable. I have read where some people do, though. It was never a suggestion from my onco.
Hope
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when i was doing taxol they at one point suggeested icing my feet and hands. I had nueropathy before the chem so tried it briefly. I do not think it helped but maybe my nueropathy would be worse if i had not?
For now dealing with my sore feet. Today was grocery delivery day, cupboard was very empty, got a nice roaster chicken, yumm, likely eat it for a week
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For a few of my later infusions I wore ice socks that I ordered from Amazon which weren't bad at all. I froze small water bottles and hung on to them during infusions which was also pretty easy. I tend to have cold feet so I usually took my shoes and socks off during chemo. I think it helped with the neuropathy. Out right icing of hands and feet would be challenging.
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Good morning, all -
Since I was cold capping during chemo, I did not ice hands or feet through 6 rounds of TCHP - it just seemed like too much to deal with all at once. Now that I'm PFC, I am noticing a bit of tingling in my fingertips. Am going to ask my MO about supplements (B-12, Alpha Lipoic Acid) that might help, but welcome your input as well.
My nail beds are also developing cloudiness and ridges about 1/3 of the way from the tips. Really hoping this does not mean that the nails are going to lift....
For those who had vision and/or taste changes: How long did it take for you to see improvements in these areas? I'll be asking about this too; seems like all the "little" side effects are kind of piling up....
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The whole icing thing- cold hands/feet- is difficult. I understand why most people don't do it. My oncologist is conservative and didn't want me cold capping or icing. My taste returned pretty quickly. My stomach took longer but is ok now. I had very red eyes for a month afterwards but that is gone now too. Overall, physically, I feel surprisingly normal now. I am doing radiation and those side effects should kick in soon.
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Sorry for absences ladies, really I miss you all. In my last replied here I find no one care about what I wrote so I leave this board temporary. I'm not familiar with technology .
hope you are fine. next Monday I will do my last Taxotere and schedule the surgery time. I had a tough time last 2 months but I hope I will finish this journey soon. I don't know if any one here had multicentric tumours (more than one tumours in different area in breast) ? surgery told me I should do mastectomy due to multi-centric to avoid recurrence. is that bad prognosis sister? I read this old statistics (1997-2010) and found these results:
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Magari... What is PFC?
Does everyone know about this? I just applied. http://cleaningforareason.org/
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Meow - PFC = Post Final Chemo! STILL doing a happy dance that I am now able to say that!!
I have heard of Cleaningforareason and think it's a fantastic idea; hope you are able to benefit from it.
Hope99 - Congrats on being almost finished with the nasty Taxotere, and moving forward with surgery! I had multiple areas of concern on pre-surgery imaging and with my family history I chose bilateral mastectomy/reconstruction without getting each of them biopsied. (My breasts were also small enough that having more than a single lumpectomy in each breast would have been cosmetically problematic.) I have no regrets about my decision.
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Hope99 - I couldn’t follow along that article very well, but prior to my surgery, I had 4 areas of concern. The MRI threw out more than the original mammograms had. They told me this was typical of MRIs. Everything was benign except my main tumor. The only scary thing to me was the fact in the breast tissue they took out (I had a reduction in both breasts), during surgery, they found a hyperplasia mass in the opposite breast. No one ever told me if it was one of the MRI’s findings. Hyperplasia is the most bottom Stage 0 condition, but nevertheless, made me cringe hearing about it. In your case if they recommend a mastectomy, it’s so that you won’t have a local recurrence since there are more than one tumor. It would improve your prognosis then.
Well girls, I have white hair beginning to grow mostly at my sides. It’s real fine stuff and I didn’t expect my hair to be this white. I’m wondering if this is the real deal I’ll be having. The top of my head is thinner - this looks so strange to me. I thought I’d be growing salt and pepper hair.
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Hope99 I'm glad you are finishing chemo soon. I'm sure the ladies here are giving you good insight about the surgery. I only had one tumor so I'm not familiar with that particular situation.
Blair it looks like you have a lot of hair coming in! I'm happy for you. I have some growth at my front hairline and my sides. It's also fine. I don't see much on other parts of my head yet. I have some very thin shoulder length hair so it's all kind of a strange look.
Magari when I first became PFC it felt almost too good to be true. It took awhile for it to sink in. Yes, you so deserve to do that happy dance!
Meow I hope you are feeling better. Hurray to anything that gets the darn cleaning done.
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Hope, they thought I had two tumors, and said that mastectomy was the only choice with multiple tumors. Turns out one was fibrocystic benign, but I was BRCA2, so had to get a double anyway.
Blair, the white comes in first, and the sides faster than the top like when we were babies. That’s exactly what mine did. I texted my hairdresser with a pic, and she said the dark would come. The chemo messes with the pigment, and it takes it awhile to remember. The dark has blossomed in the last week, and it feels like baby bird down. It’s so ugly right now, but as FAS as the dark came in, I’m hoping in a couple of weeks, I can ditch the hats.
I was so upset that all my lower lashes on the left fell out last week. My brows that fell out the week before are growing back, and I can see the baby eyelash hair too.
Meow, PFC is short for “past final chemo”.
I’m so happy for y’all finishing the final treatment. Some SEs get better really fast and some linger. The top layer of my thumbnail is peeling, and I have horizontal ridges in my nails. I know the chemo nails will grow out eventually.
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Ahhh - so maybe I’ll get darker hair that will come in later. I know it can sometimes come in curly after chemo. I have been coloring my hair with permanent color since my early 40s and I do remember having grey grow into my sides mostly when I was a brunette. I lost track over the years of what my actual color was, but I do know it has turned grey a lot. The hair will be another long journey to cope with. I hope it doesn’t look bad, but my friend said at least I would have a plain palette to use if I want to color it again.
Have a good week everyone and keep hanging in there. I’m so proud of this group and how well each and everyone here have pulled through their treatments. (Except me) Our bodies have taken a hard toll, but hope we will have many free of cancer years ahead. Spring is just around the corner - warmer days will brighten our days ahead!
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morning, i think i actually have enough hair for a trim, had an appointment but hairdresser canceled as she is down with the flu , so sort of hanging in. Interesting that color may change, mine is currently mostly white snd very fine..I had mostly brown before all this. It was also wavy now straight
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Orangedaisy thanks for pointing out that hair comes in on the sides first. It makes me feel better. I have dark hair as well as some grey coming in. The color doesn't seem much different from before my hair loss, but then I was used to seeing my natural grey/brown mix so no surprises there.
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Hi Everyone,
7 days past last chemo and I have never felt worse. But I know it will get better. I can't feel my toes and my fingers, have to roll my hips when I walk, and my BS check up - she said my left underarm is in serious trouble because I havn't been stretching and 'kneading' - she offered PT and follow up visit for Radiation and I feel badly - but I was very rude and dismissed her. I said maybe in a few months when I stop throwing up. Even Compazine isn't working very well, when I can walk and feel feet/toes again, I'll get on the band wagon. BUT! I still have EYEBROWS! Yeah Me! Speaking of hair - the top of my head baby bird hair is coming in like a Mohawk. Stylish - ha. Have mouth sores again - maybe I'll loose some weight.
I iced during Taxatere - the RN brought Special Ice bags automatically. I guess it worked until this last round. I just iced my fingers - which are much better off than my toes. No Lifting or bands- nails still strong. I just rub Vit E into my scars and into my nails 2-3 times a day.
Hope99 - I too had the worse time during the last 2 chemo treatments. Are you HER2+? I can't give any imput on surgery - I choose to have DBL mastectomy and NO reconstruction. I'm remaining flat. I'm happy with my choice.
Hey Blair - with all your issues - you did great. Your still talking to us and trying.
That's alot of hair coming in. I wonder if the Acuboost works since I don't have breasts? klvans- how is radiation going for you? Do you drive yourself everyday? Hair envy, that made me smile. - I'm going to keep mine short as possible, and maybe where a scarf. My mom kept bonnets on my head as a child - I've always had stringy thin hair.
I will diff talk to my MO about adding Perjeta to my Herceptin regiment. Good to know - thx!
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Hi, all -
8 days PFC andf still feeling pretty lousy: tired, queasy and just kind of generally low-energy. I know this will pass and I can definitely get through it because it's the very *last* time I will have to do so!
Finger numbness is minimal but continuing. I have the nail ridges, but so far not lifting/peeling. My tongue feels kind of scalded and nothing tastes as it should.... This is all temporary though, right?
Cannot WAIT for new hair to start growing in. Although I still have about 50% hanging on because of cold capping, it is thin and scraggly and will benefit a lot from some fill-in.
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good evening ladies!!
I am definitely feeling hair envy, 4 weeks PFC and still hardly anything growing up there. I still don’t need to shave and lucky me, most of 1 eyebrow fell out. Really??? Now!!! Neuropathy started after 4th chemo, just minimal but after 5 my feet are pretty numb and tingly. Just feel cold all the time. Still swelling like crazy, all the lasix is causing me to have really low potassium so I have added supplements to my daily meds along with biotin. Come on hair!!!! Slowly getting off all the meds I was put on for side effects, down to vitamins, lasix and the occasional steroid well swelling gets ridiculous.
Still weighing my options for rads, I was on board until another technician at work put their notice in. So now we are 5 short starting April 1st. So now it’s up in the air again. I need to decide by April 4th which is my initial appt pre rads. I did get my echo today, I will check my online portal and see if the get it transcribed by tomorrow. Otherwise no new is good news and hopefully I don’t decrease more than 15%, changing tx days will really throw a monkey wrench into the balls I juggle every day.
So happy for all of us for finally making it across the line with chemo. Everyone’s journey is different, but everyones journey is towards the same goal. We are rocking it no matter how we chose to take our path!!
We should be so proud of ourselves and treat ourself to something special. Something frivolous, that you wouldn’t normally splurge for yourself. That way every time you look at it you can give yourself a sense of strength and empowerment!
Tina
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Mom4gma, You might have a few more weeks before you see hair. Mine starting growing at about 8 weeks. My eyebrows fell out about that time too. My lower lashes fell out at 9 weeks. I wound up trimming the 3 lower lashes I had left. Thankfully I saw new growth within a week. A couple of days ago I realized I needed to shave my underarms. Not excited about shaving again. I swelled for weeks after I was done too. Thought my legs would never return to normal.
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Tina, I'm with you. I have some hair growth but it can't come fast enough. I'm so tired of looking like a cancer patient.
Orangedaisy did I read that right, your legs swelled up after shaving them? I haven't shaved mine yet and had no idea such a thing could happen.
Oh Magari, I feel bad that you are not feeling well. But you are right you will feel better and it's the last time. Hang in there.
Rljes, I wish you felt better too. I do drive myself to radiation. Round trip it's 60 miles. Surprisingly I have enjoyed the drive. I arrive at the hospital early and go to the floor where there is a Starbucks and other shops. I sit in SB for awhile and indulge in my somewhat dubious hobby of hair envy. Interestingly, quite a few of the hospital employees have wildly colored hair: green, pink, purple, orange, you name it. I find it very amusing. Of course some just have normal hair or even pretty hair. It doesn't matter I envy it all, lol. It seems so long ago that I had hair. It's strange. As for the rad thing, while I found chemo more difficult physically, so far rads has been more emotionally challenging. I'm doing 20 total, 16 whole breast and 4 boost. I'm at day 14. Physically I feel well. I haven't had the fatigue that some rad patients have.
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Well, I certainly have hair envy....my bald head will be bald for quite some time! Taxol #14 tomorrow. Oh my...the neuropathy is really bad. Last night I mixed Aspercreme/Lidocaine with Vicks after tossing and turning for 2 hours in bed. Then, I had my Ativan cocktail. I finally fell asleep for a few hours. I'm definitely asking for Gabapentin when I see my onco tomorrow. I only hope it helps should I decide to take it.
Hope
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Iris....I think your scan is today? Just wanted to let you know I'm thinking of you and hoping you get good results. Keep us posted.
Hope
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