Starting Chemo September 2015; join us!
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hi friends, you are all so brave. I am on xeloda now more than half way through maybe 2 or 3 more months. Because I am triple negative so no estrogen blockers or Herceptin for me there was nothing before the japsneses xeloda trial so it is now covered by insurance.
My problem is that I really do not feel well. No energy and very moody. I took a fall in the bath tub on enesdsy just got a chest xray today. Report tomorrow. Xeloda makes me wozxy and nauseous. Not like hard chemo. Much less. But this is my second fall in a month this time on my irradiated ribs.
I really want time off from work or not to work anymore
Anyone on disability or is everyone working while going through all of this
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Exercise - wow i wish i lived in Maryland! That's curious about the different tattoos that a medical office would do compared to a tattoo artist. Makes me want to see the product after a year. After Cajun said someone she knew hers rubbed off and that article there's alot to think about. I opted for smooth boobs, I was spoiled with one nipple and had the second removed so I wouldn't have to get mammo's or ultrasounds on it, as well as I wouldn't have to wear a bra! (more so that I wouldn't have to wear a bra.)
My surgeon went with a low profile gummie implants as well, I like it, I think I like it because my expander was like a triangle sticking out of my chest. He wanted to do a flap but gave me the option of no flap to see how it would look. He said he can do alot with fat grafting so that's the next step in January. I could do it sooner but who wants to deal with that during the holidays
. Currently my ta-tas are slightly different sizes (radiated side being a tad smaller) and also my radiated side being a tad higher. My implants will settle and hopefully fall a little to a natural looking position and then he'll fill in the spots with fat on my left side to match the right side size. He might also lift the right side a smidge so the nipple scares are lined up. My radiated side scars are also more tan and smooth skin like all the pores have disappeared. Lately I've had peeling but it seems all surface peeling, not like a sunburn with new skin underneath. I guess I need to switch lotions and lather the sucker up.
Alright Cajun! Before my Reconstruction on 9/30 my RBC & WBC numbers were just a hair below normal! So close!
Countryfrenchrose - I'm sorry you have taken a few falls and have not regained your strength. I hope it returns very soon. As for disability or working I worked through it but I did take out additional disability insurance just in case at my work. I am able to access this extra insurance in 2017. Every month I get a lupron shot that makes me crazy and I go through an emotional roller-coaster. Every month I wish I was rich and didn't have to work. I feel for you, I believe we should have a choice to work during treatment or not. It really should be covered. Or maybe it is I'm not sure what qualifies for people to file for disability. My dad did it years ago for a bad back.
I hope someone on this thread has more info for you or an experience to share
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El Tigre you are so good and capable. What a lot to deal with. I have disability insurance but I have not used it, my daughter who iss a doctor says it is really risky to stop working because after cobra runs out your health insurer can drop you into a pool that will not cover all need services just not sure. I am so much older than you gals 61 on 11/24. You all have a lifetime still to go with young kids. It makes me feel guilt to feel depressed
It seems that they handle BC differently when you are older.
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Good point by your daughter on insurance and cobra if you stop working. Nice she's a doctor
No way, we're all in the same boat! 60 (almost 61) is still too young to deal with this crap. They are working it out what to do differently with younger women in regards to hormones, but either way I wish they'd solve it.
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CF I am out of work through treatmwnt and it's been a mixed situation. I think if I had an understanding reliable job through all of this it would have been much easier to cope. My job before this was a 60 hour week and high stress and deadlines. So it would have been a nightmare through treatment. Everything does take a ton of energy though. Just try to pace yourself the best you can and rest and rejuvenate any chance you can.
TI grew I thik nipples are over rated I have seen some bueatiful breast tatoos I would have considered had I know about them at the time. I think the decision is really a personal choice based on your own comfort with your body and what feels right based on one's own circumstances. I met a lady who put a zipper tatoo over her lumpectomy scar.
My hair is just going nuts. I can't style it. The texture is wierd and just half curly half wirey straight. I had something important to go to last night and I finally just wore my wig.
Also I am trying to find some counseling my insurance will cover. Hoping to find a counselor who is supportive and can provide me some support during this rough survivorship transition. Had an awesome referral from the cancer center but she wasn't in network so I will keep trying.
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Hi ladies. Big hugs for all of you still dealing with this mess.
countryfrench - I'm so sorry about your experience with Xeloda. That sounds just awful! I hope you can get some relief soon. I was out for 6 months, but worked through rads, then took a month off for the hysterectomy and now back full time since May. I SO wish I could have gone out on disability. I'm about half the attorney I was.
Well, I'm joining the ranks of those who have had additional testing. I went for xrays today after lower back pain set in. I'll get the results in a couple of days. I don't think xrays are all that reliable, but I figure if it's in my bones, it's EVERYWHERE and xrays probably would catch it.
exercise, my hair is nothing short of a disaster. It is barely growing and is curly, coarse and kinky. I loathe it. I have told my friends there is one rule about my chemo curls and it is that we don't talk about my chemo curls but I get so many comments on them anyway. I also lost about 50% of my eyelashes and apparently they aren't coming back.
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I know God is in control and most of this is out of my hands now, but I can't help feeling like I'm just one scan away from stage 4. I don't hear good stories from people in their 30s who are diagnosed with aggressive breast cancer. It can't really be all gone, can it?
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countryfrenchrose I'm also one of the older ones here (59 at dg). I still haven't returned to work, plan to try the start of 2017, part-time at first. Luckily husband's salary keeps us afloat. During chemo my body crashed (am still so exhausted, haven't been able to stick to "exercise rehab") and I still have scary chemo brain problems; job is(was) extremely high stress/multitasking and I know I am still not up to it; husband and oncologist agree (meeting onc again just before Christmas about this). My last dose of Herceptin is in November; I am hoping and praying that once that washes out of my body, at least the headache I've had since May will go away, and maybe I can think more clearly and I'll have more energy...
Wishing everybody here a quiet end of the week.
Cajunqueen keeping you in my thoughts and prayersand hoping you've just got degenerative changes in your back --- that is SO common, even in young women like yourself!
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Hi ladies! The x-rays came back with no indication of cancer but possibly the start of degenerative back disease or osteoarthritis. Whatever, I'll take it over cancer.
That said, I'm heading in for a second PET scan soon. And I'm glad.
I've managed to wake up at 6 and get out of bed by 6:30 every morning this week, so I see that as major improvement in my quality of life and everything else. It means I'm DONE by 9 or 9:30, but that's fine. My kids are little and go to bed by 8. Hugs to all of you that are just putting one foot in front of the other these days.
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For the past 6 months I feel like I am 60% of what i was @ work. I asked for Adderall (5mg) and I take it when I need it, not very often but it has helped with focus and getting my work done. Lately I feel better and more back to myself which coincides with my blood counts increasing. My MO said usually takes a year or so to bounce back close to your beginning energy level and cognitive functions.
As for my hair I die it with Henna and it leaves nice and shiny and I also use some natural taming product -Andalou Naturals Smooth Hold Styling Cream Argan and Sweet Orange. My hair stylist recommends some products to soften the hair when it grows back after chemo, I could check with her what they were. Mine grew back semi normal and soft - go figure. You'll have ot excuse the mess
Exercise - yeah I'm leaning waiting and getting my first (or second if you count the radiation freckles) tattoo when my numbers are back up on only on my upper right shoulder blade. Something like this:
Along with Warrior on my upper ankle. Something to look forward too
Cajun - do you have PET scans regularly? I only ask because my onc takes a different approach and I want to get a general sense of what the norm is. Like any of this is normal for any one
That's good it is not cancer but sucks that it's degenerative back disease. But yes that's better than the big C! I do envy your positive attitude
. Yes I believe the cancer could be all gone and never to return even if we are in our 30's. I hope everyone has a great Friday and weekend!
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el tigre, your hair is so pretty! Xo. I've used Henna before. It does feel good.
As to PET scans, no, it's not routine. I asked for it. Because my risk of recurrence is climbing fast and I want to know right away. I'm not worried about 10 years from now. I'll be dead or I will be fine. They are using a new state of the art machine. The 26th it is!
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Cajun - good vibes, good thoughts, you are in my prayers for a clean scan. I hope it's a quick result and you don't have to wait too long.
Good to know right away, better chance to kick it's BUTT again!
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I have not been on for a while. Glad to see everyone is doing ok!!!
I had mammogram, 2 MRI's, 3 biopsies, and 5 weeks later, Everything came back OK benign!!! Thank God!!!!
I am still taking Everolimus (trial drug) I am pretty sure its placebo, (not really having any effects)
Of course the hot flashes are not getting better and I am still tired all the time. I joined the gym 2 months ago and I've gained 10lbs!!! I dont understand.....I am always sleepy but I dont sleep well.....I wake up 3 or 4 times a night.
El tigre I asked about taking my ovaries out when I went to the gyno last Feb and she wouldnt discuss it, but I am ER and PR positive. I had to have my uterus out years ago (36 Years old) I have not dyed my hair yet and its dark brown gray and light brown mixed lol were do you buy the Henna hair dye? I want to dye it but dont wanna use regular dye with all those chemicals in it.
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tkemp, I didn't realize you were also on the e3 trial! I'm getting the drug (have mouth blisters and hand and foot syndrome). It's unpleasant but rolling along.
Thanks for the prayers! I can't be around my kids, since I am still radioactive, so having a girls' night in. Xo!
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Tkemp - oh my you've been busy! You could be getting the trial drug and just lucked out on the side effects. Are you going to get a 2nd opinion on the ovaries? My MO first said 2-3 years then changed her tune this past few months, I don't dare ask why lol.
Henna, it comes in cream and powder. I buy the powder but it's a slight pain in the butt! You have to wear it for an hour and a shower cap or plastic wrap is a must.
Walmart.com has it sometimes. Natural Grocers carries the cream in their stores. I originally bought the powder because my hair was so short it made more sense to be able to use 1/2 the amount of the norm. You can also mix the powder colors too. I have only done it once, couldn't tell the difference.
Cajun - I wish the radioactiveness came with some cool superpowers
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The results are in! The PET/CT scan was all clear! I can't believe it. I am amazed, truly amazed. Praise be to God for his loving care of me.
"Give thanks to the LORD, for he is good; his love endures forever." 1 Chronicles 16:340 -
Also - when buying henna, caveat emptor. Most "henna" packets you find retail are not truly henna but a chemical mix. I suggest doing your research or buying online. Henna ONLY comes in various shades of red intensity, no other colors. El tigre is right, it's an ordeal to use, but is very pretty.
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That's great news Cajun!!
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Cajun, so glad to read your good news!!!
Octogirl
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Cajun that is wonderful!!!! Nothing is scarier than scans... I hope the e3 trial has good results
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thanks so much, ladies! Today is day that I moved from victim to survivor!
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Good news day Cajun xxx
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Doing a happy dance for you, cajun!!!!!
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So sweet, thank you ladies! You all are the best!
This has truly been a life-changing event. I know I am living on gifted time. By all accounts, the cancer should have already spread and the fact that I am disease free right now is from God and nothing that I could have accomplished. However much time God has given me is more that I deserve and I am grateful.
Last year I took my kids trick or treating, bald as the day is long and right in the middle of the red devil. This year, I had two My Little Ponies and a Thomas the Train and we had a blast.
Happy Halloween, sisters!
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Great news Cajun!
Glad to see that folks are still checking in here from time to time.
I've been muddling along and wishing I had more energy. I get tired easily and ache a lot, which supposedly is caused by the femara (letrozole) I'm taking each day. Seem to be managing the lymphedema fairly well and with a minimum of effort. Surgical area remains tight and requires frequent stretching. I chose not to get any reconstruction since I had small breasts anyway and I'm now 67 years old. I don't even bother with wearing a fake boob since my remaining breast is small and it's not obvious if I wear loose shirts. I never wore a bra anyway and find them quite uncomfortable. I work at home, when I have work, so don't have to worry about being presentable every day. I do manage the energy to work, but tire quickly when it comes to household chores.
My hair is growing back very slowly but it's soft and curly and the same salt and pepper colors it was before. Had hoped it would be longer by now, especially with winter on the way. Didn't realize how much warmth it provided until I was bald! I often wore 2 hats last winter.
I'm scheduled for another mammogram right after Christmas. Hope it goes better than the one I had in June. They saw 2 tiny spots of calcification and I had to undergo a brutal biopsy that left my breast badly bruised for a month afterward. Fortunately, it turned out to be nothing serious. Other than that, my docs don't do any additional screenings. Not sure why that is exactly. Maybe my age?
Best wishes to all of you!
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hi ladies good to read that most of us are well. As for me I am doing ok almost a year later. I am triple neg so no additional treatment. I did have a scare after my mom passed in August. I began having pain in my cancer side that turned out to be costocondroitis which is swelling in the tissues between the ribs. It happens after having rads and can take months to resolve. It's pretty painful and feels like broken ribs. Last month it got so bad my ro had me get a cat scan to check for micro fractures which could have been a reoccurrence. Luckily no suspicious areas. Just a lot of crappy pain which makes it tough to sleep on that side.
On the positive I just got back from my beat cancer trip to Ireland and England. It was a trip of a life time. I stayed in a castle in Ireland for part of the trip. And the best part was that I was able to do the cliff walk at the cliffs of moher which is a preserved rural trail along the coast that overlooks the highest point in the area. The trail was pretty tough with a tiny dirt path over rugged terrain, over streams, and overlooked the cliff edge with a huge drop off. This time last year I was in the middle of chemo and pretty sick to the point where I could barely walk and had to crawl up the stairs at nite to get to bed. Now a year later I am 60 lbs thinner and in better shape. Never thought it could do this type of hike.
Here is me on the cliffs claiming victory over cancer.
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Awesome pics Shopgal and the trip sounds wonderful! Yay for you!!
Octogirl
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Wow shopgal look at you☺ what a difference a year makes.
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Luzeelu - I hope your energy returns, I am told it's a slow process sometimes, even up to a year after chemo (I know yikes). Good vibes for your Mammo coming up after Christmas, it has to go better than the brutal biopsy you had before.
Shopgal - So jelly what a trip, you deserve it! Beautiful pics and you stayed in a castle?! Oh my gosh your hair! Very pretty and I love the color. I am glad your rib pain was nothing suspicious but sorry that sucks to have pain like that. I hope it subsides and heals quickly.
My loving hubby made a second video to thank everyone who has supported us during this journey. You gals are a major part of that and I wanted to say Thank you! I feel blessed to have this forum and I am lucky to have such brave women to travel on this journey with. I don't always post but I do read. I never felt alone on this journey and that is thanks to all of you.
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Today I had my last (17th) dose of Herceptin, and am officially done with treatment --- except, of course, the AI, which I guess is for life. Only cloud on the horizon is that just before that, I finally got to see the (senior) dernatologist about the enlarging lump on my big toe. He was all joking and smiling until he actually examined it. Wish I hadn't been watching his face. Oh well, more tests ahead.
Trying not to think about that.
Bought myself some flowers and ice cream, and spent a lot of time pampering my dog
Yay! At least this round is over!
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