Starting Chemo in November 2017
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Orangedaisy - Why were you given steroids? Did you have back pains too after first treatment
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Blair...Seems those 8 hours of sleep were just what you needed. Sorry you're still having those back issues! Whatever your decision to continue or discontinue treatment, it has been well thought out on your part. I'm hoping you bite the bullet and go for the final treatment. You can't base each treatment on the previous ones...hang in there!
Don't envy me...I'm just one of the few lucky ones where side effects are concerned, so far that is! Who knows what the future holds?I had Taxol #8 on Thursday. All went well. I'm feeling good today. I think I will be having scans after next week's infusion. That will be 3 months. So, hopefully this chemo is doing its job. Initially, my onco said I would be on it up to or through April. My thought is the scans will determine the next step.
Off to get my day started. Going out to dinner with family tonight to celebrate my grandson's 27th birthday....going to a Cajun restaurant. Should be fun!
Wishing everyone a good, pain free weekend!
Hope
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glad to hear taxol #8 went well for you nonahope!
Made it through taxol #11 ladies thank you for all your prayers and positive thoughts! Doctor upped my steroids and slowed the drip down.
this means i get taxol #12 next week. fingers crossed! i can already feel fatigue setting in and neuropathy starting. But i’m hopeful this goes away in time for next week’s (final) dose. surgery for me next. i’m nervous but i think my surgeon and i came up with a practical solution. Blair, we’re here to cheer you on! One more treatment... whatever you decide should be the right one for you.
Anyone hear from rljes
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Glad to hear Kat and Nonahope finished their treatments. Yeah! I hope you both continue to do well.
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good morning ladies! I finished my 9 day stretch with work and I am finall off until Monday. Infusion 4 is next Wednesday so I am going to take advantage of feeling good the best that I can before then. I have an appt with the radiation oncologist today and I will see what they say before I decide what I am doing on that route. My main lingering side effect is the swelling. It didn’t get real bad until last night my hands were tight and my feet and ankles were non existent. Got on the scale and I had gained 6 lbs in one day. So took two potassium supplements and ate a banana, took an extra lasix and a steroid pill this morning. Trying to keep the feet up and it’s gone down some. I may get my MO to change my water pill to a potassium sparing diuretic. I just don’t get enough in my regular diet plus all the water I drink leaches it out of my system.
Blair2 I am so sorry you aren’t finding relief from anything for your back. Steroids are anti-inflammatory and the may do wonders for your back. I’m surprised they don’t give you any with your chemo, it’s standard here. I take 2 pills the nights before, they give it to me iv before infusion and I take 2 pills twice a day for 2 days after treatment. They give me great energy, keep the fluid down and make me ravenous.
Hope everyone has a great start to their weekend!! Gasparilla craziness tomorrow and it’s supposed to be near 80, I can’t wait!!!
Tina.
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I’m so glad you all seem to be in excellent care with your cancer treatment centers. I had another bad achey night with my back, when it was suppose to getting better by the end of second week - at least in the past, but this seemed worse. I thought this morning - this is the last straw - I need pain relief and somebody has got to help me.
So, I called my primary and fortunately he got me in today. Now get this, he says that chemo drugs could cause any inflammation, and therefore a side effect. (Now why is the cancer center acting like this never happens?) Although, he didn’t seem absolutely positive that was it. He said a lot of his cancer patients had back pain in some cases. He asked me to point out the areas of pain, he poked my spine and asked if it hurt and I said no, but when he poked the sides - yes it hurt. I even explained the fall I had busting my lip, and the pain pattern in days. I asked if possibly my kidneys were acting up, so he said without other symptoms related to kidneys that it wasn’t likely it. However, he assigned a urine test and X-rays to rule out any damage to bones or kidneys. The cancer center always said my kidneys in the blood labs were good. So I had 4 back X-rays. In addition, he prescribed Meloxicam for pain, and Tizanidine for a muscle relaxer. Just what I need - more pills!
I won’t know the test results until Monday. Thank you girls for your input and concern - I get more attention from all of you, and I do appreciate you’re listening to my whines and woes. I so admire how you girls are sailing through this well for the most part. I think Rljes has had a rough time too, and a few others
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Blair - I'm glad your primary care doc took you seriously and ordered xrays and tests. If you injured your back in the fall, the xrays will show it. Muscle relaxers and pain meds are definitely appropriate! Keep us posted on your results.
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Hi, all. Just checking in because I don't think I've done so since last week! All is well here; taking advantage of my "good" week before Round 4 on Monday.
Went to the Look Good Feel Better workshop at the Women's Health Center this past Thursday and thought it generally worthwhile. I didn't pick up many tips and some of the makeup is definitely not my shade/formula. But they give you quite a haul so there is definitely stuff I can use and I can probably give some of the rest to a friend who is paler than I.
The most fun part turned out to be trying on the donated wigs afterwards! There was one woman who had a great time with it and chose 3 or 4 different styles - in both blonde and brunette. They helped a very sweet older lady find a style that suited her perfectly; she was literally beaming when we all told her how pretty she looked. I found a style I liked in a color very close to my own, but it turns out I have an unusually small head and so it's bit big. It won't work on a day to day basis but I plan to make it do so for the memorial I'm attending on Saturday since I don't want to have to wear a hat the whole time.
Had an appointment with my dermatologist yesterday, who I'd not seen since before my diagnosis. (My last visit was with his PA.) He said he thought hair was looking fairly good, as was I. "A little thinner, but no one would ever know you're in the midst of chemo." That was nice to hear, particularly from a doctor. My oncologist said more or less the same thing when I saw her last week, but I think it's part of her job to be encouraging.
Blair - Glad you finally got some help from your doctor. I've been told by my oncologist that the ongoing swelling and discomfort I continue to experience from my reconstruction is due almost entirely to the chemo. So it makes sense to me that it could also cause inflammation that results in your back pain.
Hope everyone is doing okay, or at least hanging in.
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Magari Glad to hear from you. I wish cold caps had worked better for me. I don't have that much hair left. What I do have left is an awful straw like texture. I'm assuming it's from the chemo drugs racing through my body. I find the hair thing to be the most discouraging thing about chemo. The bad thing is that it makes me avoid going out and seeing people. I just find it so embarrassing. When I think about how long it will take to get my hair back I get so discouraged. Well, there are cute hats out there anyway. I might need that "Look Good Feel Better" seminar.
Blair I pray you get back relief soon.
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Blair, my oncologist gives steroids to everyone who takes TC unless it is contraindicated due to other health conditions. It seems like most people on this thread are taking steroids every treatment. I am puzzled why your oncologist does not give them.
I had an ocular migraine yesterday that freaked me out. I've never had any migraine in my life. I called the eye doc because I thought it was a detached retina, and they worked me in. My eyes looked fine, and he said my description sounded like an aura from a migraine. The left side of my vision was distorted with a bright wavy line like a huge floater when I looked out of my left eye. It lasted about 30 minutes. No headache afterwards. The doc thought it could be caused by chemo or the stress from chemo. It is a brain event, not an eye event. I hope chemo hasn't triggered these for life. I have been stressed at work this week and just 2 weeks past my last treatment.
This is the week my legs swell, 2 weeks after treatment. I always forget about it until it happens. Ugh! Glad it’s my last time.
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Orangedaisy I'm on the same regime as you. Some side effects are so strange. I've had twitchy eyes and sometimes dry, bloodshot eyes. I've also had jaw and ear aches. I'm glad you got an explanation for your episode. Thank goodness you have no more treatments. It will only get better.
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i have had ocu)ar migranes way before all the chemo time, eye doc had said not to worry unless they became more frequent but mine were very rare
Well saw onc yesterday and told her i was getting swollen ankles, seems i have a blood clot so now on blood thinners. Doc said it is likely side effect of cancer, how fun, new pill
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Hi everyone
Blair, (i'm so sorry your going thru this) I think I've said this before, but it amazes me the different treatments across the world. I was told to take Claritin for 7 days to help prevent bone pain (Nothing helps this new left hip pain- well, see below) and I am to take steroid pills the day before and day after plus they put in IV during treatment. My MO is an *ss. He doesn't listen to my issues. So, I hear you. When I made my first appointment, I had requested my pre-meds be called in early and they told me my MO was too busy with new patients to do that. (i insisted and he finally did)
However - Shhhhhhhhhhhh. This is just between all of us - but I smoked some pot and my bone pain went completely away and I slept for 6 straight hours that night. I don't want to go to Jail! But my pain meds do nothing for my bone pain, and Ambien only works for 4 hours. CBD Oil is legal here, but does nothing for me. Neither did the Essential Oils.
Yesterday I made myself get up and out to go shopping for things for my new Den (Furniture has been delivered- Yeah) went to Menards (like a Lowes/Home Depot) and when I asked for help finding something - the store is HUGE, the employee asked me WHAT KIND OF CANCER I had and if they could pray for me. I was so uncomfortable. When they started laying hands on me (picture this : I'm in the middle of the store) I started freaking out - "Do any of you have a cold or flu?" I almost left the store, but one of the employees saw the "to do list" in my hand and offered to take me directly to each department and help pick out everything I needed. I think I need a wig when I go out. The Beanie is a dead give away.
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Mom4gma - Gasparilla is where I met ex-hubby #2. Year 1983. Yikes!
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Good to hear from you Rljes. Fun older photo - love to look back at different times. Gasparilla is a big event in Tampa. It's their version of a Mardi Gras celebration. I won't tell about you becoming a pot head (just kidding). Hey - whatever works.
Orangedaisy - maybe because of my heart condition, steroids aren't recommended to use, but I may throw that question at my OM. I don't know what to think anymore. That's a scare about your eye, but it will probably never happen again. I had a double vision event that happened for one minute many years ago, and it never happened but once. Could have been a TIA event telling me I had bad arteries, but my internist couldn't find anything else pointing to that then. After my second chemo treatment, I had TMJ for a whole day, but it went away.
Well - the Tizanidine and Meloxicam are taking their time to make my back feel better, but I'll keep taking them. I did sleep better last night. I've already had an hour nap after I went out with a friend for lunch. It pooped me out, she could tell I wasn't myself. I wore a scarf for the first time out in public, but not a mask. This restaurant wasn't too busy with a crowd of people. I washed both my wigs, so had to wear a scarf. Didn't notice anyone staring at me though, but I'm sure if they did, they figured I had cancer. The Mobic pill is making me tired - as if I need more grogginess. I asked my primary I didn't need more grogginess, but did he listen? No. However a lot of these stronger pain pills do this and I guess it just can't be avoided.
You won't see me laid out like this on my back!0 -
rljes - love the pic. Had a blast but couldn’t make the whole parade. My son kept worrying about my legs swelling and he wasn’t just enjoying the day so we came home early. Love the “pirate battle” and the taking of the city. Corn dogs and cheese fries, and I did have 2 rum drinks...it’s required right? All in all it was a beautiful day for it. Some people have no tact when it comes to what comes out of their mouths. Being in a large area no one even notices, or maybe there are so many odd people here no one thinks anything of it. I do give people looks and move away from them if they get too close or have any symptoms of illness.
I saw a woman today, bald as can be with nothing on her head. I wish I could find the courage to do that. Instead I had a “pirate” bandana on. I have a costume with fishnet stockings but as swollen as I am, my legs would look like a Christmas hams.
Day of rest tomorrow, except laundry, I have to get my work uniforms done tomorrow.
Tina.
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Nice photos ladies, I like it ! I always ask myself about the survivors of breast cancer in all stages (ignore statistic). How many friends or someone you know he beat the cancer and stay a long time NED ? I need to motivate myself. for my side, I know only one girl survivor more than 4 years until now.
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I've enjoyed seeing the pics. The parade looks like lots of fun. I'm hoping everyone is doing ok for the most part.
Blair...Hope the meds kick in soon. Glad to hear you went out with a friend for lunch. I often have to push myself to do things, but I feel so much better when I do.
Hope99...I have a monthly lunch with a group of friends I went to high school with. Out of eight of us, five of us has had BC. All are still surviving. I'm the only one whose BC metastasized to my bones. The longest survivor in our group has had NED for 11 years. When I told my BS about all of us in the group with BC, she was amazed and then said (jokingly)..."I think you need a new group of friends"!
Have a great day!
Hope
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Iris...So sorry to hear about your blood clot. I had a blood clot from my port several years ago. I hope you don't have any side effects from the blood thinner. I was on one of the "new" meds (Xarelto) and they had to take me off of it....my gums bled constantly. It was horrible. I was then put on Coumadin...which was fine except for having the pro-times constantly and watching what I ate. Good luck. It's always something!!
Hope
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Lovely photos! i admire every single one of you ladies who manage to keep going... i have managed to... stay indoors like i am agoraphobic but not really. I miss going out too. friends drop by and that’s good i love them for it but cabin fever is terrible!
hope99, i don’t know anyone really. But i like to take a peek at the survivor threads here once in a while when i wonder what life will be like after treatment.
rljes, hahaha that cracked me up. i would have loved to join you for a joint... i'm happy you found relief! ...i'll admit some days, treatment and having this much time just gets so rough mentally that i find myself wishing i could sneak in a cigarette somewhere within chemo. and then i feel guilty for all the months i've managed to quit and lose the urge have a cig.
been having a rough time lately having to accept what's in store for me surgery-wise. so much grief. grief for the sense of normal that i have lost, the normal life that i had to give up, the parts of me (literal and figurative) that i am about to lose... and i guess some of them can be earned back. i just want that guarantee to be there too. no uncertainties. bah! wishful thinking. Anyway i don'y want to spiral into a foul mood (i think i'm still in the middle of it)... but man this sucks, this is rough, and yes i am harsher on myself than anyone else will ever be.
saw the pilot episode of Marvelous Mrs. Maisel. Pretty good. Amazon prime has the pilot on youtube for free. Thinking of diving into a subscription to see the rest of the show.
Any good books you ladies have managed to come across the past few months?
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hope99- I have a friend who I went to high school with. She was was diagnosed with stage 4 untreatable BC 5 years ago. She was given 3 months to live and her MO refused to treat her. She fought and found a doctor who would. Over 5 years later she has beat it. I know she still has to go in every 6 months for scans but she is living her life now when no one said she would.
Tina
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Tina - you are such a beautiful young lady. Your pirate outfit was perfect for the event. I’m glad you had fun!
Hope99 - it does seem there are too many recurrences from early stage cancers. The statistics say we early stagers shouldn’t have but a 10% recurrence rate on average. However, you hear a lot on these blogs of people who end up with metastatic cancers who had early stage. Those who have escaped it, aren’t likely to be on these blogs, because they aren’t going through any treatment. It is a scare, but it boils down to 10 out of every 100 people will have it return. If you think of total population - that’s a lot of people. But on the other hand, there’s the 90% people who do not have it return. I guess we have to look at it as pure fate, and just hope our bodies can survive as long as we can. I try to realize that everyone in this world has a threat of all kinds of cancers, so no one is inevitable to this disease. Just be glad we didn’t come down with BC in the 1950s or 60s! Treatments have come a long way. It has added a lot of years of life.
Nonahope - have you had any side effects to your toxel treatment? Do you find it harder this second time around than when you were on Taxotere or Cytoxan? You never seem to get sick - which is great you can be so strong! I’m still nervous about my 4th treatment, so tired of feeling sick and tired. I’m definitely sick of not being able to move with this back pain. The drugs are helping, but I think just masking, and not curing
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Kat...I think everyone goes through that period of losing that "normal" feeling. When all is said and done, it's just a "new" normal.
Tina...That's wonderful about your friend's survival after Stage 4....gives me a bit more hope.
Blair...Taxol is nothing compared to the Cytoxan/Taxotere. At least, for me. Others have had some nasty side effects with the Taxol I've only had very minor achiness that lasts a couple of days....nothing else, like some...no mouth sores, no nausea, no bone pain etc. I'm one of the lucky ones.
Hope
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thank you nonahope
i really hope so. i am still optimistic about it. and when i see you ladies here, it amazes me how everyone copes to be honest. And i mean that in all sincerity. tina, that is wonderful about your friend. :
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Have to say I know several long term survivors.One had BC in her mid to late 30's and is now in her mid 60's with never having had a recurrence. There is no sure thing but so many reasons to be hopeful. I don't know about anyone else, but this whole experience has made me reassess what I want out of life and how I spend my time.
Tina, nice picture! It sounds like you have a very caring son. It looks like it was a fun time. Yes, get some rest now!
It was such a pretty day here yesterday. I went for a long walk with a friend and then had lunch. It was so great to get out. Normal feels good.
One week from today is my 4th treatment. Doing my best to be ready for it; eating carefully, regular walks, etc. I've had trouble with liver values and I'm always afraid they'll delay my treatment. It's that feeling of anticipation and dread that we're all so familiar with.
Kat I'm sorry you are having a hard time right now. I understand your grief. Grief for the loss of normal, grief over the physical changes. I grieved for my old body but have come to accept and like my new one. Hard to explain but I've made friends with my new breasts. I hope you find the solace you need.
rljes Good for you for finding relief! I'm for whatever gets you through (as long as it doesn't hurt others of course).
Blair hope you continue to feel better. I hope you make it through the 4th treatment. I'm rooting for you.
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Good morning, all.
Survivors: My mother had early stage BC at about 57, did lumpectomy and radiation and was NED for at least 10 years before she died of other causes. Two friends from work were diagnosed at ages 37 and 40. One did lumpectomy/radiation, the other bilateral mastectomy; neither needed chemo. Both are NED 2-3 years out. Another coworker was Stage 3, did chemo and is healthy 10 years later.
Tina - You make a cute pirate! My husband loves pirates and would probably have a blast at Gasparilla.
Went to my family friend's memorial yesterday (and wore a wig, since my own hair is so thin on top and I cannot style it.) She had an amazing turnout - standing room only at the church service and a good crowd at the "celebration" lunch afterwards. I don't even know that many people! But her parents are very social and they are all very active in their community. We just had a glass of wine at the reception part and went elsewhere for lunch, then headed home. It was actually a nice outing and I'm glad we were able to be there.
Getting my cold cap gear organized and assembling a picnic lunch to take with me to Round 4 tomorrow. My oldest friend is helping me; we don't get to see one another very often these days so it will be good to have the chance to catch up with her a bit between cap changes.
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Kat, I’m not sure if this gif will work but it’s what my sisters and I send to each other when we’re feeling down and can’t be there to hug each other.
I’m with you on the grieving of my past normal. I want it back so bad and it hurts knowing that it’s not possible. Eventually I will embrace my new normal and get to the point that line between fades but right now it’s still fresh. But, as they say, one day at a time.
Hope99, I have been very lucky that I have had the pleasure of meeting and knowing a number of women that had BC and are surviving for a number of years. My brother in law’s step mother is going on 25 years with no reoccurrence, a coworker was diagnosed when she was 39 and is now 17 years without reoccurrence, 3 friends from a former job are all survivors of 5, 7, and 10 years, a lady who works on the same floor I do was diagnosed and treated 12 years ago and she is still doing fine, my sister’s day care provider has been stage 4 for 7 years but she is still going strong, the nurse at my daughter’s school is a survivor of 5 yrs, and the lady I met through a support group is 15 years out without reoccurrence. I know my social circle isn’t super large but I don’t know anyone personally that has passed from breast cancer.
Ok, so my treatments are getting harder each week but luckily next week is the last Taxol treatment. I’m not sure what the next steps are because my MO wants to wait to see what the MRI looks like to make determination for the next phase. Since I’m in the clinical trial, there may be different path depending on the tumor’s response to treatment. So I guess I’ll know more in a week or so. Being back in that unknown phase is a little hard but if my consolation prize is evidence that treatments are working, I guess it’s a decent trade off.
Finally, I wanted to share a few pictures of my after infusion treatment team. They’re pretty awesome and I love them.
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nonahope, well no side effect of blood thinner, i am on xerelto , right now i am dealing with funkydosing junk, and having confusing time getting it straight
Ankle not swollen today or last night so that is good, the ankle was only dswollen about 3 days so we are hopeful to have caught it early
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klvans and frozentoes, thank you. sometimes it feels like it’s just me grieving but i am thankful to know that i am not the only one. surgery is coming up after chemo. i’ve chosen to delay recon until i’ve gotten past my high risk years (perks of being triple neg!) if at all. Or maybe i’l just keep going without recon if by the time i decide one i’ll get used to the UMX. there’s so many puzzle pieces to treatment that it just consistently keeps yougrieving or feeling like you keep losing something.
and sometimes i think i’m stronger than i am but at the same time this whole thing makes you realize how fragile i am too.
anyway... i hope this post wasn’t too much of a downer. i hope things pick up... long treatment road ahead still in front of me. you ladies will be done with chemo and maybe less than a handful of us will still be going to surgery then rads.
the gif works btw, frozentoes
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oh and before i forget, anyone experience chills without a fever? i’m thinking it’s taxol SE or maybe the steroids leaving my body from last infusion. it’s driving me up the wall to deal with sporadic chills and then my bald head sweating like there’s no tomorrow (hot flush from chemopause?!) 😂
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