Starting Chemo September 2015; join us!
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inSF - I had tingling and on/off numbness starting about week 5. It has progressed since then - last Tuesday was week 10 for me.
My primary worry has been retaining functionality. I can live (reluctantly!) with unpleasant numbness permanently. I'm not willing to live with loss of function. If it stays where it is now with no loss of ability to walk or use a knife in the kitchen or touch-type, I may be able to go 11 or 12 treatments.
FYI, round 10 was a "magic number" for my MO, beyond which she was willing for me to call it quits if I needed to. Twelve is optimal, I guess.
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we will make it!!! I'm on the elliptical trying to work off the Taxol restless leg/pain. My neuropathy hasn't gotten any worse this round, just not better. I can live with it, it just wouldn't be my preference.
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Minnesota - Congrats on making to the magic #10. I feel exactly the same - If the tips of my fingers and toes are permanently numb, but I can still function, then so be it. My fear is really that I will go one step too far and have difficulty with walking, typing, etc, or turn into one of those poor souls with constant nerve pain. I have already dodged that bullet with my existing nervous system issues, for which I am grateful.
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This is going to make me sound crazy, but oh well. Does anyone get a buzzing feeling after Taxol, like a non stop electrical current in your legs? It keeps me up all night, to the point that I just slapped a yucky pain patch on because i can't take anymore of being awake like this. It's this horrible, buzzing feeling. Kids up again...long week.
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Regarding Nueropothy and SE can I ask if we are allowed to drink Grapefruit juice and such to detox the liver after chemo? I did this before I had surgery and it did help a lot .Now with Arimidex I think I have to be carefuly about that. My feeling in my hands came back luckily. My Mo said Arimidex can cause aching in the hand joints. Thats a problem for a computer programmer but we will see. I hope I get lucky
ThinkingPos… Thanks for saying that. I think its difficult to feel any kinds of security with follow up appts.
aga: Welcome back. They actually showed that starting Tamoxifen and switching later is common. I also think it is good to take time to let things sink in and not feel pressured to make decisions that are so permanent. I started meeting with specialists about my OO for months before I did it.
Amy The pictures is so darling. I bet you didn't say a word when you took it. If my kids know they are getting their picture taken then I lose the moment.
For those of you fighting to get through the hike out of Chemo SE and the rest of your treatments, I am praying that your pack feels light and you feel strong.
For those of you in rads and surgeries I am sending prayers and thoughts hoping that your recovery is swift and that they do not turn you into Kentucky fried Chicken.
Today My daughter won an award in a science competition. I was able to go and enjoyed being normal for a day. I did wear my wig because it was about her and not me. The rest of the time I just sport a beanie and GI Jane. My chest is healing from the TE swap and I can sleep on my side now. My abdomen from the Hysterectomy is still mega swollen but nothing compared to the BMX last year. I am off pain pills and I finally feel like I can go for small walks. I have my kids take turns walking me around the neighborhood.
My MO tested my vitamin D and I was low so he told me 1000 mg twice a day and calcium. I am on Arimidex for 3 days now. At some point my MO and I are going to duke it out over letting me have some E cream or the E string for my girlie regions but
nothing romantic is happening in this house for quite awhile because Chemo/hysterectomy_surgery sucks. My husband is going to look back on this as the long cold winter. I am watching the weather on the east coast hoping you gals stay safe and stay warm.
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Super gentle hugs out to everybody home with sick kids --- and healthy stir-crazy kids stuck inside from ice storms. I have enormous respect for all of you --- my sons are off at college; I can't imagine where you've found the energy to take care of family in addition to surviving your SEs ((((((hugs))))))
Cajun: I had electric buzzing in my left arm from Taxotere, but it only lasted a few days, and that side has pre-existing nerve damage from cervical disease. I've also had it in my legs but before chemo; I also have lumbar spine degenerative disease and sciatica. I hope your buzzing and pains go away! Pain is awful but that buzzing was creepy!
Cheers and a wild and crazy Happy Dance for everybody finishing chemo and getting deported!!!
Amy: I agree with Aga --- postcard-beautiful photo!
Southern: Thank you for posting your meme. I need to keep reminding myself to never give up, even when so many things have been going wrong.
Minnesota: You hit the nail on the head --- my greatest fear is losing functionality. The numbness and clumsiness in my fingers and the lymphedema that worsens whenever I use my hands intensively limits how long I can do stuff, and still prevents me from doing some of the things that give me pleasure, but I've at least been able to do bits and pieces of some of my hobbies. The worst case scenario in my mind is becoming completely unable to care for myself and to land at the "mercy" of someone else's idea of what is comfortable/adequate care for me. At work I've seen too much how helpless people are ignored and dumped in a bed and ignored; I'd rather just not "be" than end up like that.
I had US of my left breast and both armpit lymph nodes yesterday (breast and lymph nodes clean!! Yay!). I also had US of my infusion arm because it still hurts in huge area where my veins got massively inflamed from the FEC chemo. The skin isn't red anymore except for a tiny area, but my whole arm still hurts
All the veins in that area are unfortunately closed shut but there are no blood clots (yay!) He showed me where there are still a couple open veins that can be tried Tuesday when I go for my first restart Herceptin infusion (yay!) --- luckily two, because the nurses always blow one before they get the iv in. I'm so relieved I don't need blood thinners, and that there are still at least SOME open veins! 
Wishing everybody here a quiet and comfortable weekend. And hoping all you East Coast people don't get hit too bad with that snow storm (((hugs)))
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inSF: Thank you for posting the Lancet articles regarding AIs and Tamoxifen. My brain is still massively foggy from chemo 3 1/2 weeks PFCbut those articles are so clearly written, that even I was able to understand them
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My MO didn't give any do not drink/eat during chemo, so I've been drinking grapefruit juice frequently. It's the only thing that tastes pretty normal.
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tessu, that's great news about the u/s!!! Regarding the veins, will they repair themselves for use down the road? And you're right, the buzzing is uber creepy!
Let's see some snow pics, ladies!
I s
pent 2.5 hours driving in the middle of the night so my son could sleep. All 3 have the flu.
Praise God for Neulasta or I'd be in trouble right about now. I just invested $250 in oils to see if we can get some relief. Is anyone on here experienced with EOs? I ordered certified Manuka honey too and we are trying DoTerra On Guard + 🍋 lemon.
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I'm not all caught up on posts yet but I wanted to post a beautiful pic from Cannon Beach, OR we are celebrating our 20yr "together" anniversary
I hope every one is having a nice weekend.
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Cajun, the bottoms of my feet are "buzzing" and are painful to walk on at first. Ugh.
I'm glad to hear I'm not the only one having a cold spell, exercise_guru! I'm trying to 'take care of things' for DH's sake, but we are rarely doing anything full-blown because it's flat-out painful. My onc nurse gave me handouts on vaginal moisturizers ("NOT the same as lubricants, Amy--these need to be used continually!") and I was a little taken aback by them. I'm not entirely comfortable with the ingredients in them. She said the discharge can be off-putting, and honest to goodness I have enough off-putting nonsense happening. It can wait a couple of months until I'm done chemo.
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El Tigre - congrats on the anniversary and thanks for the beautiful picture. It's a great reminder that we need to keep living our lives, appreciating beauty and joy. Despite the chemo SEs and long treatment road ahead, I have recently started thinking about (eventual) vacation.
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El Tigre that beach looks like Heaven
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El Tigre - Thanks for the inspiration - what a great idea!
(All - An acquaintance who just completed her 2nd BC treatment (whole shebang) advised me not to go on vacation until at least one year after the end of chemo. She went on an expensive cruise with a girlfriend. She ended up feeling horrible because she was in bed so early every night, leaving the friend to fend for herself. I'm going to do a "vegetation" get away this summer and just lay in the sun, but am putting off a trip to Hawaii with my best girlfriend until Feb or Mar of 2016 because of her advice.)
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It all depends on which flavor of vacation. There are the "let's go do/see/explore/experience" ones that I would not be able to manage for awhile now... and there are the "vegetation" ones Lisa mentioned, which is a brilliant word. It's why I'm so excited to go on a cruise--I've always wanted to go on one, and doing it on Disney means the kids are busy, happy, and occupied without me having to manage everything every day. Food is taken care of, the whole deal. Whew. And I can "vegetate" to my heart's content. WOOT!
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Minnesota Lisa- I am barely 3 months PFC. I just returned from a very busy action packed week in Nashville with 3 of my girlfriends. We were on the go everyday, up late at night. I managed fine. I slept really good at night. Didn't notice my hot flashes at all. Now that I am home I am exhausted but it was so worth it and so much fun. It was nice to get away from the big C and have some fun again. We are planning a trip to Mexico in March, 1 month after my exchange surgery. I will just R & R on that holiday. Do what feels right for you. Everyone is different!
El Tigre-happy anniversary. Enjoy your time away with your husband.
CarolinaAmy-a Disney cruise will be perfect for you. Kids will be entertained and you can still get away. Enjoy making memories with your family.
To those of you still dealing with treatments and SE, hang in there. It does get better. I thought I would never feel good again. I am seeing glimpses of my old self every now and again. Starting to feel more like me.....well the NEW me. We are all incredibly strong women. We got this
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has anyone had a high ki-67, but low onco score? The discrepancy is frustrating. Everything pointed to a luminal a tumor (highly er/pr positive and her 2 neg) but the darn ki-67of 25%
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ElTigre beautiful pic! Hope you and hubby relaxed. Amy a Disney cruise sounds perfect. Time to veg and just worry about chillin out in the sun.
Dee! So cool to see you pop in here. Good to hear you had a blast in Nashville. So worth it to party and feel good.
As for me I am snowed in or is it under here in philly. 22 inches of way too much snow. I was out 3x yesterday to shovel my steps and sidewalk. I finally flagged down some one with a snowblower to help. Tried to do my car and thankfully I had an neighbor come to help. Then I got yelled at my my next door neighbor for shoveling. She has been my protective second mom since I started chemo. Today tried to get my car out (suv) and had neighbor help to dig out around my car. Anyone want snow? I can ship it to you. I really don't need it. Stressing about getting to rad appt at 8am tomorrow.
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I'm with Amy: it depends on the vacation. We went to Jekyll Island and Savannah last weekend. My husband wanted to go skiing, but I was afraid that two weeks PFC that I wouldn't have much skiing in me and we wouldn't get our money's worth. So we played it safe. We went on long bike rides and walked everywhere we went. It was fun, but we were back at the hotel before midnight each night. I felt better than I thought I would. My biggest problem was that my nose wouldn't stop running.
The biggest problem in planning is how we're going to feel by the time the vacation rolls around. At almost a month PFC, I'm still dealing with some SEs, but they're more annoying than debilitating. I'd be comfortable handling most any vacation or work trip now (my last work trip was assessing hospitals in rural Cambodia for a month). But I'm starting six weeks of rads tomorrow, so I'm still grounded. Now I have to see how bad radiation is going to be for me. Putting off a real vacation for a year PFC would be overkill for me. For others, not so much.
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Celebrated the current Finnish "heat wave" with a long walk in the park with my dog.
That large flat white area is mostly lake ice, with the swimming beach on the left. Sorry the pic is rather dark, but it's quite cloudy. It's been as low as - 30 C for over a week, but yesterday morning the temp jumped to -7 C and today - 4 C. Trust me, it's delightful!
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DeeRatz and Scotland - Thanks for the inspirational words about life PFC - after 18 weeks of chemo, I needed it today!
Dept of Clarification: Not suggesting anyone put off vaca's for a year!! Just relating my friend's caution about planning ones where you want to be very active too soon PFC. I'm heartened so many of you have felt decent energy relatively soon PFC - gives me hope.
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It's so hard to know how we're going to feel! Our getaway last weekend was to places we'd been many times before, and wouldn't feel like we had missed out on much if I had no energy. I was pleasantly surprised that I felt good. It could have easily gone the other way. One of the things I love about this board is hearing about the wide variety of experiences everyone has. I swear it's kept me sane
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I'm bored. Staying in more than ever to not possibly catch a cold or something. If I didn't feel well then that'd be one thing... sigh
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Scotland good luck tomorrow with rads. Mine goes very quick. It's literally 10 minutes total. Some days it takes a bit longer with them trying to line me up exactly, but they run like clockwork.
Southern yay for normal thing sand bouncing back quickly. Keeping you in my prayers for Thursday. Again if you have any questions about lumpectomy surgery feel free to pm me. Best advice was ice a lot and no lifting. Expect to be tired but not like chemo. It took me a week to feel better and another week after to feel 100%. Do you know how soon after are you starting rads?
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Do you all know how long after chemo are we still considered immunocompromised? I guess I'll ask my MO tomorrow during my follow up. My family wanted to go grab some oysters, but I'm not taking any chances just yet. I wonder if Herceptin suppresses the immune system in the same way. I am so tired of being afraid of getting sick. Still have my cough and hope it doesn't interfere with lumpectomy Friday.
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Re how long we are immune compromised it depends on how our WBC count reacts to chemo then how quickly it improves. Once in the ave range my MO said all is good. Lots of protein helps build this back mor quickly.
Wishing all of you having surgery this week an easy successful surgery.
Carolina Amy you will love the Disney Cruise, you may never see your kids as each age group club is so much fun! We had to beg our then 5 and 12 yr olds to have dinner with us at least once! We worked at Disney for many years and went on the inaugural cruise on the Magic so I know it's even better now.
I can't wait for a relaxing get away after rads. A nice warm place like the beach sounds heavenly.
Can anyone tell me if you are allowed to skip a day of rads if something comes up?
Here's to a good week of forward movement for everyone
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Two weeks PFC, I had an MO appointment with blood work. She said that my WBCs were good, and I was no longer compromised. I still didn't risk raw oysters at the coast that weekend because I wasn't willing to get sick. My husband got sick off of oysters once, and it wasn't pretty. It was hard watching him eat them last weekend, though.
Lila-Claire, I think you can skip a day of rads, but you have to make it up. See what your RO says. I'm sure your RO has an opinion. I'm asking mine about their bad weather policy. I can get to the hospital if the roads are closed (it's a 40 minute walk), but I don't want to show up if there's no one to zap me.
Fidget and Southern: I hope you both have uneventful surgeries!
Shopgal: ten minutes? I can live with that
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fidget hoping for an easy surgery for you on Friday.
Scotland a 40 min walk to rads if the roads are closed? No way sister. You need to rest and take care of yourself during rads too. My hospital said their bad weather policy is if we can't make it call and if we are able to come in later in the day to call them and they will fit patients in at a later time. So tomorrow I am going to try to get to the hospital for my 8am appt. I know the major roads are cleared of the snow, but not sure about all the side roads leading to the majors.
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Shopgal: I'm trying go for at least a 40 minute walk every day, and walking to the train station cuts the walk time in half. I walked home from chemo once. The roads are clear here, so I'm more curious for next time. We'll see how cocky I am after a month of rads. A friend ordered me not to ride my bike to treatment. This might just be my week to annoy her (before irritation and fatigue kick in). I've never been any good at going to the gym, but I do OK if I walk or ride instead of driving when I can. I'm up 10 pounds since I started chemo, and it's time to get back to exercising.
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About immunity my RBC and WBC too 9 weeks to go back to normal just got there this last visit. I am still avoiding crowds etc u til flu season ends unless it is so awesome that to miss it would be a travesty.
Will go back and read more s I can see what everyone is doing
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