Chemo starting April 2018
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Batata, its hard in rads. Emotionally i can relate. Hopefully ur close to being done. Any questions u can post and we all can chime in to help. Dont feel alone we are here.
Cyber hugs
Update: i cant see so well when I dont have reading glasses on hence edited.
After I wrote this, I got onto my chart with all my drugs that I had taken and Xeloda is there. I cried.. im tried , scared, sad that I cant just be done. So it appears that u take 2 tablets twice a day for 14 days than off a week.. tomorrow will be better !
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Batata, I'm glad you checked back in. This thread is pretty strong and there is always someone here. Linda and urdrago, so many ups and downs. Just know we are here. Urdrago, I love it. Tomorrow will be better. Big hug to each one of you
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Hi Batata! It's nice to see you! Happy new year to you
Emotionally, I'm up and down, too and I'm finished with treatment. I can't imagine still having something in front of you.., Urdrago. I'm sure you're exhausted and Linda, you, too. It just seems to go on and on, doesn't it? But, Urdrago, Frog has said that Xeloda is very easy - hoping she'll hop on here soon and reassure you. Linda, I can't imagine having to go back and be hooked up to an IV for the trial, but you can do this and you'll get a great benefit from it!
As for recurrence thoughts, yep, they are super tough to deal with. I am usually a very positive person, but it does get in my head sometimes. I try to tell myself to just enjoy today because none of us knows what tomorrow will bring. I don't want to fall into that hole of worrying and waste time and happiness by being dragged down with "what-ifs" that may never happen.
I've had many patients tell me their stories after my diagnosis and so often they are several years out from treatment and are just fine. Some tell me of in-laws who were diagnosed 40 years ago when women didn't have the treatment's we do today and they never recurred. A close friend of mine was diagnosed 25 years ago - had an MX and that's it... No chemo, no rads, and she's perfectly fine today.
Maybe this will help - someone in another group I'm in said her MO told her that, of 100 women who are diagnosed, 70 will never have recurrence - with or without chemo, But they don't know which 70, so they give chemo to all 100. Of the remaining 30, 15 will never recur after having chemo. That gave me some perspective. Why shouldn't I be one of the 85 (like my friend) instead of one of the 15?
Big cyber hugs to you all!
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I started doing yoga and relaxation exercises in order to shut down my fears. After a few false starts, I think I am getting the hang of it. Feeling calmer and in better mood most days. Even with lymphedema bothering the hell out of me. Try it, guys. I don’t know how these poses are doing it, but somehow they work.
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Ingerp I love your curls!! Gives hope to those who are behind you in trearments!!
~Nanette
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Nanette--I had it cut down pretty short over the weekend. I think I'll keep it like this until something closer to my own hair starts growing out. I'd rather look like a guy than a poodle. ;-)
Inna--I've been doing yoga fairly regularly for about five years. I keep telling people if you're only doing the physical part, you're missing half the benefit. Back in 2016, with my first BC, I can't tell you how much the self-calming helped me through lots of phases of diagnosis/treatment. Every class should leave you feeling at peace and better able to cope with the shit in your life.
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I'm probably the wrong person to chime in on the fear of recurrence but I do know it gets better with time and every clear scan. Honestly, when my oncologist released me at the 5 year mark from my lymphoma I wasn't dealing much with fear of recurrence. Of course when I found this breast lump I was the patient who responded thank goodness when I got the BC diagnosis. For me I couldn't even fathom a benign result and BC was a better outcome than a recurrence of lymphoma because if my lymphoma had returned stem cell transplant would have been my only option. I know it sounds silly but one reason I selected lumpectomy was I felt that if I had a recurrence of BC then I'd have the option of double mastectomy and with my chemo history chemo options will be limited from here on out.
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Are there any good topics on hair regrowth? I'm considering making an appointment to get my hair shaped up. I've used the search function but haven't found many discussing timeline for regrowing hair.
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hey duffy..do you mean how long your hair is at a given month? To get an idea for styles? If so I have a link. Of course the girl is super young but some great idea for styles as we go through the hair stages. Deb
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Deb - I want my hair to look good but don't want to mess up growing out my hair. Right now my neckline and sides just look messy.
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duffy, girl..my hair is a mess. I really should make a sooner appt. Right now its Feb 13th which is over 8 months PFC LOL. We are going to south beach the following week. If it were summer I would care more. I know what you mean. We want a longer style but it still needs shaped. I think I'm going to have a few awkward months where it looks worse before it looks better. You could get your neckline and sides shaped. Taffy is great to keep the rest under control. Google "my cancer chic-anna" one of her links showed how she got through each month as she grew her hair out. It helps to have a young face of course lol. I have a feeling I will have a headband stage if I want this to grow out right. Hope you are doing well! Deb
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I had mine cleaned up for the first time in December (last chemo was August 3rd). She just kind of trimmed the longer hairs (which were the ones that never fell out), cleaned up around my ears and neck, and trimmed the back and sides a bit. I just had it cut pretty short again last weekend--it's growing in with chemo curl which is driving me nuts. I'm pretty sure I'm going to keep it short until something closer to my old hair starts growing in. I do not like looking like a poodle!
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Thanks Deb and Ingerp - I may have hubby just clean up my neckline and look for some product to help control top and sides. Love all the looks on cancer chic. Son is getting married right around the 2 year PFC mark so I'm really trying to plan ahead for a cute style.
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Hi all, love the looks and I enjoy having my curls. However sometimes they seem to be out of control. A friends advised me mousse bcuz it will weigh them down and I shld have more control. I Havent tried yet..
So I have a bit of info to share. I have to get insurance preapproved for Xeloda. I was doing a cost comparison between pharmacies.
Option 1) 6400 monthly
Option 2) 3500 about 3k different per month.
MOST RX insurance has resource for u to find lowest costing pharmacies.
So I was chatting with my insurance company and they say sorry but you've been denied.
At that moment the insurance company said i denied, I cried!! It was hard to hear I cldnt choose the drug I wanted to fight cancer and reduce my risk of reoccurrence. I do know I have to live for today and worry about all this next week. My heart hurts for others that go thur being turned down..
Im waiting for doctors office to call RX insurance company back and disputed my rejection..
Hugs to all sending good vibes
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Urdrago, oh no! I'm crying with you! I am sure the MO will get it straightened out. I can't imagine that you will really be denied, especially since others are getting the medication. It's amazing what a difference the pharmacy can make re cost. I never realized until DebAL and I were talking during our meeting that my Neulasta was $9400 each time! Hers was "only" $6000 or something like that. Clearly, it pays to shop around. Hoping that you are continuing to heal from the rads (and enjoying your new grandbaby). Fingers crossed that your Xeloda comes through ASAP!
Duffy, maybe this link will help with your hair growth question: https://moniquerose8.com/2017/12/17/hair-growth-timeline-post-chemo-breast-cancer/ . I thought the (almost) weekly pictures were very helpful. My hair growth is behind her photos, though. She has much more hair than I do at her 17 weeks photo (I'm 18 weeks PFC). Also,
I found some cute styles as women grew out their hair on Pinterest: https://www.pinterest.com/pin/130534089172890415/?lp=true .0 -
Nice pictures. I am really behind... 3 month post chemo I look like that girl did 10 weeks post chemo.
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Urdrago, I am sure your MO will straighten everything out. They can’t deny you medication!
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Udrago, I'll tell u my story. I was denied neulasta and was prepared to pay $8,000 X 4 shots but wrote an appeal. No way was I going to be hospitalized for neutropenic fever in order to get covered. Makes no sense. I was approved on Easter Sunday last year with chemo starting that Monday. I will share what I learned.
Your office is probably submitting an appeal on your behalf. In my case I was denied too. Should that happen to you again this is what you do:
Call Insurance company yourself. Demand to talk to someone that can email you the guidelines for Xeloda approval. Plan to be on hold for awhile. It is your right to those guidelines. DO NOT take no for an answer! Offices can NOT get the guidelines but you can. Once you get them there is probably a list of criteria that you must meet to get approved. Read each one carefully. You may only need one of them!! If you find something that may work write a letter to the insurance company focusing on the one criteria you meet. I'm serious, I will help you.
I was denied neulasta for chemo. I spent many minutes on hold, got my guidelines. I built my appeal letter around one of the criteria I needed.
If the office tells you that you are denied again please call yourself. It's worth the effort. What i learned is that it takes an escalating an appeal before it goes peer to peer between 2 oncologists. Once 2 physicians in the same field discuss, you have a better chance of winning. My insurance admitted it could be YOUR oncologist doing a peer to peer with an OB GYN lol..on the other end asking for approval. Is that not insane??? Once YOU escalate they are forced to make 2 oncologists discuss and you have a better chance of getting approved.
Sorry but it pisses me off that it comes to this. I've already decided when I retire that's my calling lol. Write appeal letters. Insurance companies should not decide your treatment.
It may not always work but it's worth the fight. Should you get a 'no' from the office again I'll help you with an appeal. This ain't over yet my friend...no more tears just yet. Keep us posted. Hugs!
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Here is my hair PFC 6 month. I think. I use moose to calm some of the curls down. Not going to color or cut for a while. Leaving it alone for awhile.
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Undrago that would piss me right off! My option of insurance is that I pay my premiums for a frickin reason! Grrrrr 😡
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Life I like your hair! Those soft curls look great. I can’t even think about growing my hair out. It’s super short for me for a while. I’ll attach a picture from yesterday’s Herceptin.
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Life, Ingerp, you look wonderful! This group is such an inspiration to me.
Urdrago, fight the bastards! No crying
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Interg I think your curly picture is really cute. I do really like that style you are rocking now. It looks good!
Deb your hair is taking off like a weed! Looks very soft. Very beautiful.
GaWarrier is that your natural color?
InnaB I really hope that your insurance approves the machine that I use. It does seem to help. I have started doing weight training again to see if I can get some strength back in my arms so I can start bowling again. I have been using my machine everyday.
Duffy thank you for sharing your story. You are a very strong woman indeed.
I set myself up a personal goal. I've decided that I want to be able to bowl in the women's state tournament on March 3rd. Before I go on I just want you all to know I am not a professional bowler by any means . I'm lucky if I break a 110 when I do bowl. Lol. But I was quite bummed when I had to drop out of the league I was playing in on Friday nights last year. I got pretty excited when I got a text message asking if I wanted to play in the tournament. So I'm going for it!
Well I have got a lot to do around this house. I'm still trying to clean out closets and drawers and stuff and getting rid of crap that I don't need. Today I'm tackling my little office with all those papers. Ugg!
Have a wonderful blessed day!
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Life, I will be calling Monday and asking for the guidelines. I was honestly caught off guard. So Sorry u went through fighting the insurance company. It dont seem right that we have to explain reasoning for drugs for a disease.
Love the hair photos everyone's length looks so even.
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Guys, did anyone experience the radiated part of the body being a little puffier than the other part? My radiation ended in November, but I just noticed that the clavicle on the side that was radiated is not as prominent as the other one. I think I feel a small lump above that clavicle moving under the skin. Or maybe not exactly the lump, but definitely something that doesn't exist on another side. Freaking out...
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As soon as I read ur message I looked and felt around. I dont fell or see any difference of my clavicle. Im just ended Rads Jan 4th. Does you clavicle hurt?
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Nope. Nothing hurts, I just feel something on that side.
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InnaB, could it be Lymphedema up there as well? It takes awhile for skin to change and heal.Best to call your MO office tomorrow have them check it out.
Cyber hugs
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That’s what I am hoping for. Ir some kind of scar tissue.Already sent an email to my MO.
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InnaB I checked as well. It is tight on the side of rads but no lump. It could be scare tissue. My nutritionist / chiropractor explain to me that I needed to have massages done before radiation to break up as much scar tissue as much as I could because radiation would harden it up and make it lumpy.
Definitely keep us in the loop of what your doctor tells you. I will be checking back periodically this week to see what you found out.
Hugs
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