Starting chemo January 2018
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Congrats Lkinkc! It’s so nice to move onto the next phase in treatment
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Just wanted to encourage the ladies who are still undergoing chemo, or recovering from side effects!
You are doing great!
You are almost there!
It get better! Really!
Hair grows, energy level comes back, steroid weight goes down.
Hung on there!
Love to all.
Olesya
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Thanks Olesya. One more TPH to go. Visited w RO yesterday- setting up for 30 radiation treatments. I've been posting over on the "Let's Post our Daily Exercise" thread https://community.breastcancer.org/forum/58/topics... as I wanted some advice on heart rate during chemo.
What a long freakin' year....
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Hi Ladies,
Got some upsetting news yesterday. Here's the back story: After my 7th taxol ended up in the ER with severe back and rib pain on my right side. They sent me to the ER to get checked for a blood clot. Long story short, everything came back ok, but I had to live on percocet for a full week just to function. MO sent me for a bone scan to be safe. Got the results yesterday and there are 3 areas of "suspicion for metastasis". 2 ribs (2nd from top on the right in the front, and bottom rib on the right in the back) and a suspicious spot on my skull!!!! My MO didn't even tell me about my head - I saw that on the report that I asked the nurse to give me. He said he wants me to finish chemo (I"ll finish June 6th) and then he wants me to go for a PET scan on June 11th. I had a pet scan right before I started chemo and it was clear. He said they are very small spots and he can't be sure until the pet scan. But, I still have dull pain on my right side and the fact that there are three spots so spread out including my skull - which I never ever would have thought of - has me so terrified. I just don't know how to process this. I have to wait an entire month for this pet scan. It's agony! This is a game changer - I'd be stage 4 if this comes back positive on the PET. I don't understand how it could have spread though - I can barely feel my tumor in my breast since I've been doing chemo - and it was really big to start with so I know the chemo is working there....I'm just at a loss. I feel so defeated right now. I just keep thinking about my two little girls and I don't want to leave them without a mom.
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Paisley, please dont worry! The PET scan is the tool that will give more info, until then-you’ve got nothig to worry about! I really dont think there could be mets that would develop so quick AND during chemo!
Plus, that can be number of things, cysts and such! I had a number of weird pains during Taxol and it turned out to be nothing.
Focus on getting thru chemo for now-it is enough on your plate -I am sure of it! Maybe try to plan some family getaway couple weeks after your last chemo? Plan for some gf to come to your last treatment? Something to look forward to and stop overthinking and spiraling into the rabbit hole
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Don’t get ahead of yourself, Paisley. I also can’t see how you could get mets while doing some heavy-duty chemo that shrunk the tumour.
I’ll be thinking of you and send lots of positive vibes your way.
Big hugs
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Rang the bell today! It felt awesome!!
Thinking of you Paisley.
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Coach1216-congrats! Doesn't it feel good?:)
Paisley -I'm with girls:please dint over think it. ..
Okkate-I am so very sorry to hear about your sister....
Update: I have received the genetic testing results.on the panel of 23 different genes all results are negative!no mutations,and therefore no hereditary connections , even though in my maternal line women had all kinds if cancers (kidney, liver, skin and breast)!which means my cancer was just a fluke, and my daughter doesn't have any higher chances than anybody else.Yippy!
Radiation is going well. 8 out of 20 is done. Nothing too radical yet.skin started to get pink a bit and felt slight pain in the tumor bed, which is all to be expected.
Lupron/Tamoxifen combo makes me sweat at night like crazy-hot flashes like there no tomorrow! I use peppermint hydrosol to keep me cool and lots of towels.since my cancer is hormon sensitive can't take anything to elevate the menopausal symptoms. I also think that Tamoxifen is causing my joints to be stiff which makes sense , because estrogen works as a lubricant for joins.
Went for my 2nd Look Good Feel Better workshop ( brought my beauty kit from last time).had great time and made new connections closer to home.
And here is an update on hair. My last chemo was on March 27th. But I shaved my head 2nd time before my 3rd Chemo on March 5th.so hair had been growing for 2 months now. Still fuzzy, but starts to fill in more.plus hair grows everywhere!
my nails are a wreck though....
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Oh, Paisley, I'm so sorry! That is so scary. PET scans pick up so much stuff though, and are notorious for false positives. That's one of the reasons they aren't more routine. No words can take away this fear, but knoe that we are here for you. And you can do this part, too.
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another thing i learned in my genetic counseling, that MRI is a better screening tool that mammogram in young women. It's because our breast tissue is still quite dense and it's hard to distinguish between what is what on mammogram. it is said that any dense areas, bones, and abnormalities show up white on the image. with age the density of our breast becomes less prominent, therefore clearer image is obtained. That is why the mammogram is so efficient in older women.
also i learned that breast cancer and colon cancer share a gene, so the mutation of it can be passed onto next generations.
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Oh Paisley, how scared you must be! But really.... you are bombarding your body with three different chemotherapies. Nothing should be able to withstand that. Try your very best to not freak out. I had a PET with something weird on my ovary and it took months and a few scans to see it was an active follicle, so don't hypothesize until you have a definitive answer (and I know it is easier said than done).
I've been told of a Full Body MRI which doesn't use contrast and shows both soft tissue and bone. Ask your doctor which of the diagnostic tools are the best. I still don't understand really one from another. The MRI can't be done, though, if you have expanders in.
Coach - CONGRATS on ringing the bell!!!!
Olesya - keep your nails hydrated! That was the advice the nail tech gave me. Rub cream in every night and do packs on hands and feet with socks on them so they are really saturated.
Well, its Friday, and I've noticed that by Friday I start to get tingles on my hands and feet from the Taxol. By Saturday I have a short temper and by Sunday I am downright in a nasty mood dreading the arrival of Monday. This monday will be my 9th Taxol --- so need to get through these last 4 without chewing glass.
I had to take my wig in to be properly fitted and I'm on pins and needles (oh wait, my hands and feet?) awaiting the call to go pick it up. I told them I absolutely must have it on my head at their place by latest 4 because I have to pick up my son from school. God forbid it not be ready! and what .... no loaner??!??!?!
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Coach 1216 - congratulations!!!
Olesya - you look great, as always. I finished chemo on March 15th and already have a full head of hair. It's short, and unfortunately it is salt and pepper now, but I got full coverage. How long do we have to wait to colour it? I heard six months, but I'm tempted to do it sooner. I'm hoping for a nice pixie next months. Most importantly, my eyebrows are coming in nicely. I don't know if it was the Biotin, but the bald spots are gone.
Congrats on the genetic test results! I got mostly no mutations, but they weren't sure about a couple of the genes (not the BRCA ones, some of the more obscure ones that they now test). Apparently they don't have enough to benchmark against, and based on what they had, mine were different, so I'm supposed to call every year and ask if they found something new. Can anything be simple in this whole process?
Regarding dense breasts - mine were also very dense, even in my 40s. They should do the MRIs regardless.
Amelia - I hear your concern about the wig. I want to take mine in to get lowlights and get it washed and styled properly, but it's the only one I have and I don't go out without it. Sadly, when my kids bring their friends over, they check to make sure I have it on. So it goes...
I'd be interested to know what the other wig wearers do for wig care. Do you wash it yourself? How often? I wash it almost every week, because I also exercise with it on, and it gets sweaty.
Take good care, ladies, and have a wonderful weekend!
xo
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Paisley, I'm so sorry you are going through this additional stress and during your chemo too! There is a wonderful thread 'you're not stage IV, but have questions' that would probably be very helpful to you. I've attached the link below. The Mods are really knowledgeable and may be able to address concerns you have.
My MS and MO both gave me 'thumbs up' and the next day I headed to Alaska...for 6 months! Driving up from TX and am camping out in a Wyoming thunderstorm right now (the rest stop has wifi!)
I was cashing out at a grocery store and an older gentleman entered the store, walked up to me, and told me he 'digs ladies with shaved heads'! I didn't correct him...
So, SO glad to hear your stories! We've come such a long way since January.Brava dear ladies, Brava!!!!
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lmurphy if you come through driggs Idaho on your way to AK and need ANYTHING then it would be such a pleasure to provide for you, from another bald -headed lady.
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Paisley- that sounds really scary. I agree with the other ladies, though, that it will help to just try to get from moment to moment. I'll be wishing for the best.
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Hi Ladies - I'm happy that most all of you are getting on with life and and living it!
LMurphy - have a wonderful time in Alaska! It sounds like the perfect place to recharge and soak up clean pure nature.
Olesya - always looking great! Are you not doing rads? School should be out soon - I hope you and your daughter have a wonderful summer!
Roxy - glad to read your hair is back on track. There are some natural dyes that can be used. Even my MO approved one of them. I wash my wig in a tub in the sink and swirl it around with the shampoo. No fancy wig salon settings for me. I let it dry overnight and then hit any damp spots with the hair drier. If yours is natural hair there is no worry with heat. If it is synthetic just don't melt it!
Paisley - sending you a huge huge hug. I know this wait is excruciating. There was a study published that baby aspirin helps prevent mets. It is on one of the boards today. If your MO approves start it up asap. Maybe if there is something fishy brewing it could stop it in its tracks.
Well ... I've been dealt the shittest card to date. My genetic testing came back showing a mutation on CDH1 gene which is very rare and very serious. So it wasn't the plastic bottles of water ingested throughout the past 25 years, or the wine nor the cheese. My ILC came about from a broken DNA. This is the card that wins me the prophylactic mastectomy (which I was already planning on) but it also is extremely suggested to have the stomach removed to prevent gastric cancer (I guess people can live without a stomach, who knew?). I'm floored. I feel like I've been handed a death sentence although my husband is trying to tell me that the test has just saved my life. I'm unable to look at it that way but I figure it will be something I'll have to accept and do within the next few years (when I 'm strong enough to handle a surgery of that nature). Of course Iv'e been pouring over google and they even suggest for people with the gene mutation to not have children. I can't stop crying. We have no incidents of gastric cancer in our family, then again there were no incidents of breast cancer either. By the time I crap out at 92 I wonder how many original parts I'll have left.
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Don’t panic, Amelia, and stay off Google! Just because you tested positive for the gene doesn’t mean you will get stomach cancer. After all, the gene is in your family and, like you said, no one had gastric cancer. Just because you have bc doesn’t mean you’ll get this one too. After all, breast cancer is so common, it was just a higher likelihood.
I’m hoping you’ll get a few opinions, and I’m sure you will.
Thinking of you and sending all good vibes your way.
X
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Oh, Amelia, I'm sorry about your results! I also tested positive for a genetic mutation--CHEK2. It sucks to know I'm at a high risk for not only the breast cancer I have, but other breast cancers, thyroid cancer, and colon cancer. It's not a lottery I wanted to win.
Good luck getting your opinions and making tough decisions. Roxy13 is right--just because you have the gene doesn't mean you will get the cancer. Beware the Googles!
On a personal note, I've finished radiation and meet with my medical oncologist tomorrow to talk hormone therapy. On to the last stage of treatment! Anybody on tamoxifen or aromatase inhibitors? How's it going?
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I had two genetic changes of "uncertain significance" - in the ATM gene and the STK11 gene. Like I mentioned earlier, I'm supposed to check in every year and see what, if anything, they found out. I will, obviously, but I have to say i'm happy to be ignorant right now. Who knows what cancers are encoded in my DNA, but at least right now I'm not worried.
@Okkate, congrats on finishing radiation! i've been on Tamoxifen for about 6 weeks. It hasn't been bad. The first few weeks were a bit of an adjustment. It made me a little dizzy, and decreased my appetite (could have been something else, though, who knows). I didn't get hot flashes or any other nasty side effects, at least not yet.
I'm more concerned that I've developed PTSD. I got prescribed some anti-axiety medication at the time of my diagnosis, as I had some major panic attacks, but had to get off them because they interfered with the Tamoxifen. I got an alternate prescription, but decided not to take it and see what happens. But now that I'm not busy doing chemo and seeing doctors all the time, I think the enormity of this whole thing just hit me…. We'll see. I keep meeting people that went through this years ago. No one seems particularly traumatized in the long run. I think it's just an awful year.
Take care, ladies
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Hi all,
About genetic testing and information: I am BRCA1+ and have known this since before I was diagnosed with breast cancer in 2015. I highly recommend facingourrisk.org, which is the website for FORCE, the org that helps people understand hereditary cancers of all types (not just BRCA). They have a conference every other year, and it's in October this year in San Diego (I think).
Take heart if you have a genetic mutation: knowing mine has saved my life thus far, and it allowed me to plan for life without my breasts, ovaries, and uterus. I am one of the only women in my family who get to say they won't ever get ovarian cancer, which took the lives of my grandmother, aunt, and great aunt. And, because of my BRCA status, I have known to be hyper-vigilant not only for my primary cancer, but also for recurrence, which I caught while it was contained to a lymph node, and therefore still curable. I had triple negative cancer the first time. It is EXTREMELY UNUSUAL that I would catch a recurrence so early. So, genetic information, while there is a ton of grief associated with it (I won't go into the implications for my children), is vital and useful information.
I am getting taxol # 9 of 11 in a few short hours. I'm awake on 40mg of dexamethasone, which wards off the dreaded reaction. They give me another 20mg of Dex, plus 150ml of Benadryl as pre-treatment. Looking forward to my benadryl nap! I've been severely anemic these past few weeks, and have needed two blood transfusions now, with perhaps another one coming after treatment. I get extreme shortness of breath and a high heart rate, plus diarrhea and extreme fatigue. I attribute this to the carboplatin, of which I have one more treatment next week. I am really just trying to hang on through these last treatments. My body feels so beat down.
I wish you all the best as you round the home stretch on chemo treatments!!
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I’ve been with this group since starting chemo in January. I haven’t posted much but so appreciate everyone who does.
I’m a wreck. 6 wks post chemo, I went to Cyprus. While there I developed vertigo which I’ve had for 7 days. I emailed my Onc on the 3rd day and she said we will do a scan if it persists. I haven’t seen a doctor for this. I’ll be back in California Saturday night. I terrified I have a brain metastasis. I feel overwhelmed and it’s all I think about. I’m assuming I won’t be able to reach my Onc until Tuesday as this is Memorial wknd and she is off through Friday. Not sure how to deal with this. Any advice? Thanks
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Krose- unfortunately we are all condemned to think that any twinge or pain is a recurrence
Could it be possible that you got wind in your ear and scrunched up your neck and shoulder thus pinching a nerve? Or posture from looking at a device?
I’ve had vertigo on many occasions over the years and it was all due to posture.
We must have a mantra that reminds us not to fret unless we have proof in hand otherwise we will loose our minds with concern.
Keep us posted and wishing a good result for you!
Rosy- the ptsd is probably the post treatment “now what”. You’ve gotten over the biggest hurdle - allow yourself to breathe and be thankful. And take meds when you need them. We need to have a crutch at times. We’ve been through a wringer. It’s impossible to just carry on normally
Xx
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Oh, Krose, I'm sorry you are going through this! I think recurrence fear is totally normal, especially since we are so close out from treatment. Vertigo from an inner ear thing triggered by flying would totally make sense, though I'm sure you will be a bit on edge until you get the all clear. I think we'll all need to figure out how to manage these tough feelings and concerns. Sending you good vibes!
And Roxy--YES to ptsd. It has been a tough six months-year, and the weight of it is only now hitting. Sending solidarity vibes your way.
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Krose and Paisley - I 've been thinking of you a lot lately. It is the worst not too know what is going on, and to have to wait until you know something. Hung on there ladies. The fear or recurrence is real, and until there is some confirmation it will linger. All the best wishes and virtual hugs.
Okkate- how is your sister? Did you help her to find this amazing forums? where she is in her treatment?
Roxy- my hair is also coming back salt and pepper, and I'm still not sure if it's doing a good job covering all the head: i still see some bold(thinned out) spots. My scull as it turned out is very uneven, so I suppose, when shaved using electric razor, in some areas it was a bit closer to skin, so that hair is still needs to grow to catch up with the longer ones. In any case, I have been alternating between scarfs and no cover at all - the wigs are just too hot to wear with the Tamoxifen/Lupron hot flashes.
Amilia -thanks for reminding to hydrate my nails. They are in such a miserable shape: stripy, bumpy, discolored and somewhat coming off of the skin at the ends...
Tamoxifen/Lupron combo causes horrible night sweats, that keep waking me at night, which is totally unfair, because at 2 y.4 m. my daughter has finally began to sleep through the night(waking once doesn't count:))
Radiation is going well: 13 out of 20 is done. Still no major side effects. Pinkness of the skin comes and goes. So far I have only used homeopathic calendula cream twice and gel straight from aloe plant once. I've decided that starting radiation on Tuesday or Wednesday, and also to have long weekend in a mix is a good thing, because this way you get an extra weekend to let your skin to heal.
I'm starting to feel tired. Still not sure if it's due to radiation or the fact that I need to drive 1,5 hour to the hospital every day to get it done.
I'm off to plant some vegetable seeds in my raised garden beds:)
Everybody have great weekend, and Ladies in States - have a great long weekend:)
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Krose (and others on their first go-around)- After my first chemo regimen, all kinds of weird things happened to my body for months afterwards. You name it- I would get muscle spasms that would put me in bed for days, and once I had a migraine that caused me to lose my sight for like five minutes. I had fat necrosis, and rib pains, and neck spasms. None of those turned out to be my recurrence. But I spent a whole bunch of time thinking they were mets. So, I get it. But, here’s what I learned: from symptom to scan to result is usually about two weeks for me. It somehow helped me to just think: I can handle anything for two weeks, and after that, we’ll see. So, that’s the thought process that made those times easier to handle, mentally. Expect your body to do weird things as it recovers from all this treatment.
I am in a bit of a hole at the moment. I was too weak to get taxol on Thursday, because I’ve been so anemic. I was disappointed, but not enough to extend my treatment past my June 7 deadline. My body is so beat down right now- I’ve had two blood transfusions this week. It’s so, so hard to be missing out on all the activities my kids are doing in the nice weather. I am like willing myself to be less tired. But perfect strangers are walking up to me in public and telling me they will pray for me, and everyone else is treating me like I’m about to die, which I’m not at all. Anyhow, it all makes me want to isolate myself, just to avoid these interactions. Anyone else feeling like this?
I hope not for your sake! Happy long weekend, Americans!
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Thanks everyone for your advice. I arrived home last night from our trip. I still have vertigo and it has improved. After the long plane rides my back was very sore, I have sciaticaand I have some numbness in my toes, where I already have mild neuropathy. Of course, that can also be a symptom of a brain tumor, so my anxiety has only increased. I have to wait until tomorrow to schedule an appt since it is Memorial Day wknd. I’m having such a difficult time controlling my anxiety but I will try my best to keep it under control.
Eschindler, I hope you are feeling stronger soon.
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Hello January sisters-
Checking back in to report that I had my final chemo yesterday, hooray! It was a dose-dense TPH, 4th of 4, after 4 DD AC. Woof. It's been a long winter/ spring. Feeling pretty good now, thanks to the dex and the pre-meds, usually day 3 is my crux. Looking forward to NOT getting beat down after feeling strong 3 weeks afterwards.
I'm prepping for the radiation, which is another half hour away than the chemo, making it 1.5 hrs one way. Once I know the schedule I'll post it up on my meal train site, which has been awesome. Coming home last night completely drained to a nice chicken/ asparagus/ pasta salad dinner was amazing, thanks to the Meal Train.
Helluva road we are on, ladies. Patience and persistence to all.
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Hi Ladies! I don't write in much these days - I'm sometimes too lazy to make it over to my computer! I've just had #11 of taxol and am so excited next Wednesday will be my last one. I've been dealing with some super annoying side effects that make every day tasks (like moving) difficult. My lungs are soooo tight and uncomfortable, I can't take a deep breath and just walking around makes me short of breath. It gets worse every week and I tell the doctor and nurses. They never hear anything and I had a chest x-ray that was normal last week - so I guess it's just an annoying side effect of the taxol. They assure me it will get better when I am done. I'm on steroid at home for 3 days after chemo to help with side effects, and like clockwork, every Sunday when I'm not on them anymore, I run a fever through my next treatment on Wednesday when I get more steroids. This basically makes me feel like I have the flu for 3 full days of chills, fever, and aches and pains. Last week, my MO told me since I'm not neutropenic, I can go ahead and take tylenol to help with the discomfort. It only helped a little. I just keep telling myself - ONE MORE! Almost there!
Congrats to all that have finished! That's so encouraging and great to hear! I can't wait to join the club!
Thank you for all the support on my bad bone scan and upcoming PET scan. I asked my MO if I could get the PET earlier so I don't have to stress about it, but he wants me to finish chemo first - something about chemo or PET interfering with each other....So, I have to wait until June 11 to get the PET scan and I see him on June 12 to get the results. At least I don't have to wait long for the results. Cross your fingers for me please! I'm so worried about mets to my bones.
Olesya - your hair is coming in great - looks good! I'm so looking forward to mine growing back! It's started to grow back on my head during taxol, but is super sparse and totally white/gray. So, it's hard to see! I can't wait for it to thicken up when I'm done with chemo!
Next in store for me will be my double mastectomy at the end of June. Super dreading it. Any one have that without immediate reconstruction? Any advice?
Take care ladies! I don't post much, but it doesn't mean I don't read your posts and think about you often!
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Hi, everyone! Congratulations, Homemadesal, on finishing chemo. You've had such a tough road! PS--I'm originally from Idaho, and your part of the state is just so beautiful. Lucky you!
And Paisley! One more to go is amazing. I'll be keeping my fingers crossed for good scan results next month. Waiting is the absolute worst part.
I'm three weeks out from radiation and a week on tamoxifen, and I'm feeling pretty good. I'm off to NYC to see my sister tomorrow. She had bilateral lumpectomies, a sentinel node biopsy, and axillary node dissection on one side on Tuesday, and she's doing pretty well, considering! I'm really looking forward to seeing her, and to reminding her as she begins this journey that there is another side.
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Hello, my dear ladies.
I have 2 more boosters of radiation to go , and the effects starting to show: fatigue, moodiness. Skin is holding up, though, which is nice.
Today I sent my 2 yo.daughter to the farm, because after doing some housework in the morning( vacuuming, laundry, swiping) by noon i was completely wiped out! My hubby is at work, so I couldn't find energy to keep her at home and deal with going to bed regiment.
Okkate75- hope your reaction to Tamoxifen will not be as severe as mine!Also please pass on the good wishes and speedy recovery to your sister. I keep thinking of her.
Homemadesalsa - congratulations on completion!
Paisley2916- a few more days of unknown...
Enjoy the weekend, ladies.Life is beautiful!:)
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