2017 Diagnosed-- A Place To Share "Whats Next"
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Hi there Castigame. I'm glad you're doing better physically and I'm sorry that work and the wretched ongoing insurance paperwork is a pain. Yuck. I was lucky enough to be able to work through treatment but there were definitely days my head wasn't in the game and I just left early - or skipped meetings - or nodded pleasantly while not listening. Breast cancer takes up so much mental space! Hope it improves for you soon; I'm guessing it gradually will but if not I like that you're mentally exploring Plan B. Let us know how we can help.
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PeacuJeanne, Are you sure you are going to need chemo with the Herceptin and Perjeta infusions? I was able to skip it since I had already had the taxol (when they thought I was Her2 negative) and just do the Herceptin and Perjeta infusions. Dana Farber said no way for more Taxol because of the risk of Neuropathy etc... without any reward. I see you had Taxol also during the summer.
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Castigame:
Are you having GI issues? Consult at Mayo. Sounds like an excellent plan to me.
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Runrcrb - Thanks for the info on swimming. I think I'm going to wait until my skin heals a bit more. I only had a red/pink itchy spot and I continue to use the Aquaphor. I don't want others in the pool to freak out if they see me with this big spot either. In the meantime I started exercise classes and that's wearing me out anyway!!! Thanks again.
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shellsatthebeach I was nervous about neuropathy, too, but found out I am not getting Taxol. I am getting 4 doses of CMF chemo -(cyclophosphamide, methotrexate, and fluorouracil) I should find out tomorrow what time I'm scheduled to get the port on Thursday and we'll get started. So your diagnosis changed after you had the mastectomy, too? Nothing like surprises, huh?
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Gm, sisters
Peachy, Gentle hugs.. if I read it right you are getting chemo for clinical trial purposes. If I am wrong apologies.
Want to start swimming again like I want to go back to the study I started but did not finish. Bought beautiful bathing suits.
GI issue- regardless what Mayo doc say I am not taking my colons out. I am sick of doctors appointments. I am at a stage I start forgetting drs office addresses which was not even dreamt of during 2017. I knew drs addresses tel #s along w individual treatment dates in 2017.
I have to go pick up a letter from PCP that says I can work. I have not gotten paid for the last two wks bc I forgot to bring 'return to work letter"
DH is in severe knee pain from fluid build up. Time to be a good wife for change.
Happy Tuesday!!!
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Castigame—- what is the latest with your colon? I must have missed a post? Last I read you were taking pills and then going back due to polyps??? I sure hope you get the best possible out come with this issue (well, with all my issues, really)
I missed work yesterday due to several Medical visits and their side effects. It’s so cold this morning, wish I could have just pulled up the covers and rolled over when alarm went off.
Hope your hubby’s fluid build up in knee goes right away. Has he experienced this before?
Hear you about work. Sometimes it is hard to give 100% as there are so many other things going on. Hope your experiences at work are short lived and that you find your groove or find a better fit.
I think of you often and say prayers for you as well as everyone else going thru BC.
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Random question for those of you girls living in the frozen midwest. Do you notice your port aching any more when you get really cold? I was walking the dog last night when it was nearly zero, and I was really noticing mine. I was just wondering if it was apt to be more cold-sensitive.
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Ellyn27 - my doctor put me on Tamoxifen - will change this medicine if the SE are too terrible. First dose was last night, fingers crossed.
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Just a quick note to say that as someone who was diagnosed right at the end of 2017, I find it quite encouraging to read the posts from those who are already a year (or almost) beyond ... it's good to hear that you're finding your new normal.
Curious - are any of you in school by any chance? Wondering how manageable school (as in being a student, not teaching) & treatment might be.0 -
moth, welcome to our group and glad you are finding it helpful for you
I am not in school so I can’t respond to that particular question. I know Annbee teaches school. Maybe others, too.
I work full time, 4 10 hour days. I worked thru most of my 20 weeks of chemo. My infusion day was Wednesday which was my day off. I missed a couple of days here and there due to sleep issues mostly but not too many days missed due to chemo. Saturday and Sundays were my “off” days on A/C chemo while Thursdays were tough due to steroid high from Wednesday Taxol chemo which kept me up most of Wednesday nights.
I was off for a few weeks after my surgery and I missed 2 weeks during rads when my skin broke down.
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Rhyfelwr- I have not noticed issues with my port in the cold. But then again, I try to stay inside and gen it’s cold!!
Shoveled snow yesterday without noticing my port.
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tlfrank—. Hoping for no SE for you from Tamoxifen
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PeachyJeanne— good luck on Thursday with your port. Sorry you have to go thru more chemo but glad they found the change in your pathology so that you can get the best suited pathfor you treatments. Hope the herceptin and perjeta kick the butt of any remaining cancer cells.
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I finished 28 rounds of rads last Friday. Had a lot of peeling, redness and irritation but nothing ever opened up. I know you can have SE for several weeks after rads so I am hoping my skin continues to hold up. I was most concerned about my TE but it also seems to have held up. So, I see MO next week to talk about hormone therapy, possible trials, and then on to the PS to discuss when I can have my implants. I am pretty unhappy with how my TEs look right now and am hoping she can reassure me this is not what the final product will look like. They are lopsided and one is bigger than the other and both don't seem big enough to me. Anyone else waiting for exchange surgery? Any idea how long you will have to wait?
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New to this thread! I finished rads on Dec 4th and got a cold the day after...then got it 2 more times! JUST starting to feel like I might make it.
I started Anastrozole and Fosomax mid October and haven't had any real issues with it...a little joint pain in my hands and back that comes and goes.
For rads I started using Pinon (Pine) Pitch cream, it's something we can buy in the trading posts out here in the southwest, but, I think you can order it online, too. I mixed it with aquofor or emu oil...it was really helpful! I also used the green tea at times...it was hard to do as I was on the road a lot and had to stay at my daughters during the weeks of rads. Honestly, I was struggling with the loss of DH & was in a fog from hell. It's lifted some.
Next step is exchange! Hopefully the 1st week of March. I have been so very lucky to not have suffered badly so far from any se's...some neuropathy, loss of nails (toenails are still growing out), I still having cording in my armpit...ugh...chemo brain and I forgot what else...lol, maybe that IS the silver lining?
It's good to see everyone doing well. Cheers for a smooth 2018!
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Utjoy, welcome!! Hope life is getting easier as time passes. I cannot imagine what you have gone thru but keep you in my prayers.
Sorry you had to endure more than one cold. Hope you are feeling better now.
My cording is not gone yet either but is getting better. I am seeing a physical therapist to help me break the cords. Range of motion is much better but far from pre-surgery.
I have an appointment next week with gynecology surgeon to schedule hysterectomy. Got a Zoladex shot yesterday to force menopause, and will take Anastrozole when it arrives in the mail.
It has been so cold so far this winter that I am already ready for spring ... and seriously talking about moving to a warmer climate.
Wishing you nothing but good news in 2018 and the strength to recover from 2017
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I haven’t post here for weeks only lurked 😉😉 because I don’t have anything new to say.
Started my boost today, 4 more to go then I’ll be finished. Now I’m starting to think about what am I going to do after this journey. I have line up all my appointments afterwards, should I go back to work part time? Maybe I just retired and do voluntee works?
I feel my time is more valuable because I’m not even sure how long am I going to live. I don’t want to waste my time, will like to do things I like to do and meaningful also.
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utjoy and dodgers girl, I feel for you! Cording is painful and so limiting. After about 6 PT sessions and my therapist teaching my husband how to do the lymphatic massage it was so much better and cording has not returned. After radiation I now have issues with my shoulders and my range of motion is worse. I'm sure more PT would help tremendously but it is slowly improving. utjoy, can you get PT after you heal up from radiation? It mad enough a world of difference for me
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Dodgersgirl...thanks for the kind words, good to hear you're doing ok...what an ordeal you had, too...hope the dh is doing better! I read where he can't run the snow blower...damn! HE'S probably glad (did he pay the doc to say that? lol). I hope you have an easy time with the anastrozole...I went through menopause early, started at 38 and was all done by 48...I thought that was just fine, alas, it also meant I got osteoporosis, a -3.7 in my lower back...I think that scared & depressed me more than the bc dx.
PauletteK, I hear ya, but, all we can do is make good memories to leave behind for our loved ones that will hopefully take the painful edge off their loss...of course, we never know that we might be the ones losing a loved one.
Legomaster2, I live so far out in the boonies that I can't hardly do pt...would love to, I do have an indoor pool available except that the heater went out and we're waiting for parts...I hope that helps me when we get it going again. My breast bone, under the te, is still pretty tender...will be so happy to get a squishie!
Summer...so looking forward to it...mostly. I really try to make each day count right now...even though I don't do a darn thing...just heal.
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Be careful what you ask for moving to warmer climates! Here in Houston we’re halfway through a 2 day ice storm!
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utjoy- my RO said swimming is the best exercises for cording and lymphodema... how fortunate you may soon have an option to swim indoors!
Paulettek- congrats on being so close to the end of rads. We have come a little big way, haven’t we!
Had my dexa scan today. Appointment with surgeon next week to schedule hysterectomy so getting close to the end of treatments, hopefully.
It is sooo cold outside again today. Wind chill -15 when I left for bone scan but it is going to warm up this week!!!
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Hello everyone. For the most part I have felt good and healed well from my radiation therapy, but I thnk the fatigue is really settling in, five weeks after finishing radiation. Yesterday, I was so exhausted all day and was in bed by 8:00 p.m. and something very rare for me happened; I slept 12 hours, just getting up once during the night, and right back to sleep! I still feel tired today, but not so much that it keeps me from doing anything. I sure hope it's not going to be a long term thing. Next Tuesday, I go to a town near us to have blood work done, then back the following week for a teleconference with the Medical Oncologist in the big city. Also next week, I got to the smaller city for a Bone Density Scan to check for Osteoporosis (and am REALLY hoping there are no signs of metastases), and the the following week I also have my last appointment with my RO when he turns me back over to my MO. If there are no concerns, we are planning to go ahead with an eight day trip to Mexico from the end of February into March. Then no more appointments until we go to the big city to see the MO.
Hope everyone is managing well and just wanted to let you know I think about you lots.
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had my dexa scan today to check my bone density as a baseline and tonight took my first Anastrozole so moving on to the next phase of BC treaynent
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I hope the baseline results are good Dodgersgirl and that you side effects are minimal. I may be switching to an AI next month if my estrogen tests come back menopausal for the second time. Tamoxifen has been good to me so I'm hesitant to switch.
53nancy, rest up if you need it. Maybe you caught a virus or something. Just listen to your body and sleep when you need it.
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Thanks, Legomaster. I don't feel like it's a virus,though lots going around. Toda I feel the same, so tiredand it's barely 10 a.m. Have a great day
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OCDAmy,
I am having same issues with my TE"s. They look lopsided, lumpy and it seems like they start at the base of my neck. My PS said the same thing yours did, so hopefully it's normal and we'll be much happier once the exchange is complete. If I remember right, the exchange will be scheduled a month after last fill? Chemo brain!
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Vslush, thank you for your reply. I have to wait a minimum of 3 months after rads (and possibly longer depending on how my skin looks). One of mine is up really high as well. The non-cancer side I had a nipple/skin sparing and that is the side that looks weird. It sits lower and the nipple is also low and it looks smaller. It almost seems like there is too much skin or it wasn't expanded enough. I see the PS in about 6 weeks so I hope she has some reassuring words. Best of luck to you.
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I had my port put in this morning. The procedure went well. I'm just now starting to feel a little dull ache but not too terrible yet. Unfortunately, I was not able to get my first infusion since my insurance company did not approve yet. Grrr..
Slight chance it may come through today and I can go in tomorrow. I hope so. I don't want to push out a week.
tlfrank I was on Tamoxifen for the last month and had very minimal side effects. Mostly hot flashes. It's on hold now due to treatment starting. Hope the same for you.
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PeachyJeanne, I hope your approval comes in quick. I had my chemo on Thursdays and it worked out great. Weekends were kind of lazy but I felt ok. Usually just tired from the mess but never nauseous so that was good.AC was a little harder than taxol and I slept a lot on Friday. It was nice not to have to worry about work and my husband and boys were around to help or keep an eye on me.
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