Starting chemo January 2018
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Hi Everyone, you had all given me some great advice as I waited for my brain scan. I had it done today. Within 90 minutes my oncologist emailed me that it is totally normal!! So relieved! Anyone else waiting for a scan or results, hang in there! I’ll be thinking of you
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krose- such great news!!!
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Excellent news, Krose! xx
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Thinking of you, Paisley! Today is your last chemo!!!!! xx
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Had my last chemo today!!!! I'm so happy to have finished and am ready to get through these last bit of side effects and move on to the next phase which will be a DMX at the end of the month. Next week will be super busy and stressful - PET scan on Monday to see if what showed up on my bone scan is cancer or not, Tuesday I see the oncologist to get the results of the pet scan, and Thursday I will be at the hospital all day for mammograms, ultrasounds, meet with breast surgeon, and for all if my pre-op testing. I should get my surgery date that day too. I am so relieved to have one part of this journey over and can't wait to just keep moving forward! In this picture is my favorite nurse who has given me my treatments for most of my taxols - I just love her!!!!
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Ring that bell, Paisley!! Congrats on finishing the hard part!
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congrats paisley! I love that shirt of yours!!
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Congratulations, Paisley! Sending postitive and loving thoughts your way for negative scan results. It’s so hard to wait but thankfully you will have the results the next day.
This group iswonderful and so supportive. Makes life easier!
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krose - great news! Not that I had any doubts ...
Paisley - congratulations!! Btw - you look great! You glow!
Glad to hear great news all around. I was thinking the other day that we have, or are just finishing, our treatments, and have entered that stage when we are already worrying about mets and the next cancer. I might have been the first, when I thought it spread to my rib. Let’s just call it what it is - unnecessary worrying - and be happy we are through this ordeal!
Lots of love!!
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Thanks Ladies!
Yes, it's a shame that we have to deal with the fear of mets and recurrence all the time. Even before I had the rib pain and bad bone scan, I worried - now it's just magnified! Can't wait to get this scan over next week to know once and for all. I'm trying to stay positive, but the unknown is just so hard to deal with.
Roxy - thanks for the "glow" comment - it's the steroids!!!!! LOL! Roxy, why did you think it spread to your rib? Did you have pain? Did you have testing done? I had severe pain in my chest and middle back which then the bone scan showed two suspicious ribs. My nurse today said that she's seen things before show up on a bone scan that turned out to be nothing, so I'm trying not to worry, but it's hard.
Krose - so happy to hear that your test results came back good! That's such a relief and so great!!!!
Amelia - thanks for remembering my last day! I'm so happy to be done. I had no sleep last night - was dealing with a fever from the taxol that I get every week, and also woke up dreaming about my last treatment. I think I was just so filled with emotions and thoughts, I couldn't turn off my brain. When I left the cancer center and got in the car, I actually broke down and cried - anybody else get emotional after the last treatment? I don't know what came over me. I guess it's just been such a long road and I was remembering when we left there for the very first time and how long ago that seems now.
Well, I will still stay active on this board, but I guess I should find a double mastectomy board to join now - I could use some information on that since that is my next step. Anyone have or will have a double mastectomy here? I'm terrified of surgery - I've had 2 c-sections, but this will be the first time I will be completely put under with anesthesia.
Thank you for all your support and informaiton. This group has been so helpful with getting through this difficult time. It's so nice to know we are not alone and we are always here for each other. I feel very lucky to know all of you! Hugs!
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Huge congrats, Paisley! Sending good scan vibes your way. ❤
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Hi all,
I have my last chemo tomorrow! I am so happy to be done!
Also, Paisley, I have had a bmx. The message boards on it here were really helpful!
Regarding recurrence/Mets fears, I know they are persistent. And, I would seek help (whatever that looks like for you!) early and often to manage those anxieties. Otherwise, they can rule your life! After this long journey, you all deserve better than that.
Best of luck with your next steps, ladies!
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Paisley, I also had a bmx back in November. I also had two C-sections with my kids. I wouldn't say the mx was easier or harder, just different. The total anesthesia - it was my first time too. All I remember is having a nice, deep, uninterrupted sleep. Something I noticed when I woke up, this being something those of us who have kids learn to appreciate and remember for a long time
I was part of the November 2017 surgery group and documented my trials and tribulations through the mx there. I think even back then I said I didn't find the whole thing too bad. It's mostly uncomfortable. Take your painkillers - I was given Oxycontin and my husband was worried about addiction, but I wasn't going to tough it out and took them as needed. At the end I had a few pills left and flushed them down the toilet. I didn't develop any addictions.
Regarding my rib met alarm - yes, I did feel some pain, fairly sharp at first, under my right breast, just a week or two after I had finished my chemo. I went to see the PS and she thought it was muscle pain. At that time, the pain had dulled and it was fairly superficial. It was in an area where they had stitched the Alladerm (sp?) to tissue. I didn't do any other tests (my choice). The pain is still there, very dull, and seems to increase after I exercise, so it's most likely just muscle.
Best! And hugs to the rest of the ladies!
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What a lovely group. I have gotten so much support and insight from this thread. A couple of observations:
I got a lot of external "congratulations" about finishing chemo on the day of the final infusion (May 30), but internally felt like the last few days (a week post-final-chemo) were when it really hit home, as the side effects were wearing off. No more smack down by taxol just as I was getting strong again. Huge relief.
And Paisley- I had a single mastectomy (I can't remember the abbreviations) the day after Christmas 2017. Honestly it was the least painful and least invasive part of the whole experience. I spent the night in the hospital but could have gone home. Axillary node dissection and port placement (Jan 2 2018) was MUCH more painful and unpleasant. I don't miss that sick boob at all- glad it is gone, along with its alien invader.
I am really enjoying this respite of 3 weeks between final chemo and radiation simulation (June 19). It is gorgeous here and the last few months have given me a great appreciation of being alive, outside, with friends or hubby or dog. I'll post this pic in one of the exercise threads, but here's a photo from my bike ride yesterday. Teton Canyon is my happy place in the summer too.
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Thanks for all the input my sisters. I really appreciate all the feedback from this group - it is SO helpful!
Having a rough last taxol treatment unfortunately. Not horrible, but worse than the recent ones. Had the last taxol on Wednesday. Got a call from the nurse on Thursday morning that I needed to go to the hospital that day and get calcium and potassium. Was there from 12:30pm - 5pm for that - longer than chemo takes! Still on steroids today and I usually feel good, but last night had arm twitches and slight leg pains and today having issues with muscles cramping again. Eating dinner last night, my jaw cramped up. Playing cards today, my hands cramped up. Annoying! This hasn't happened for a few weeks since my dose was lowered, but is back again this week. Super tired too, but I guess that's to be expected at the end.
Feeling super nervous about my PET scan on Monday. I'm bummed I missed the call from the hospital to go over the test - I've had it done before but I had some questions to ask them. Every week for the last 6 weeks on taxol, when I go off my steroids on Sunday, I end up running a fever until I go back for the next infusion on Wednesdays and get more steroids. So, I'm most likely going to have a fever on Monday for the PET and I don't know if I can take tylenol and I'm hoping the fever doesn't interfere with them doing the test. I have to be there at 7am so I guess I'll find out when I get there. I did as my MO about it when I saw him last Wednesday and he didn't seem to think it would be a problem. I'll be really disappointed if they don't do the test after waiting for 3 weeks for this! I'll find out the results on Tuesday afternoon. Just really want to get this over with.
Thank you for the good vibes and wishes for a clear scan. Someone also reached out to me in a private message with a similar situation that ended up being clear, so I will focus on that and know that it is a possibility that it may just be nothing. I've been having trouble sleeping and have been dreaming about cancer lately. Now that chemo is done, this PET scan and surgery is becoming so real and coming up FAST. The surgery (and now PET scan) are the most stressful parts of this entire process for me. I'm really having a hard time thinking about how I'm going to look after - disfigured comes to mind. Mutilated is another word.... I think it's just going to take me a long time to adjust to all of these physical changes....
Sorry to be such a downer - I go through phases of ups and downs (usually more ups), but lately down. I think once the surgery is over with, I'll be able to start the process of moving on and that will be helpful.
Roxy - I'll look forward to that deep sleep! I could use a good sleep! Glad to hear the pain was manageable. I don't worry about becoming addicted to painkillers. I had to take percocet for a full week every 4 hours for the back and rib pain and stopped taking them as soon as I didn't need them for the pain anymore. I do carry them with me everywhere though because I'm so paranoid of that pain again, but I have no urge to take them....
Glad to hear your pain is most likely muscle pain. I hope it subsides soon!
This is super long, so I will say good night! Thanks for being here ladies! This sisterhood is amazing and I really couldn't get through this without all of you!
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Paisley thinking of you. Hope your PET scan was squeaky clean. Waiting is so freaking hard.
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Thanks Homemadesalsa. I had my PET scan this morning and have an appointment with my oncologist on Tuesday (tomorrow) at 2:00pm to find out the results.....thanks for thinking of me. I'll let you know what happens. Ready to get this over with
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Fingers crossed for you, Paisley!
I'm DONE!!!!! I am DONE with chemo! Yesterday was my last (11th) Taxol. Hallelujah! I have been waiting for this day since January 2nd when I started my first chemo. I think I was the first on these boards to start and one of the last to finish .....
I ENDURED! WE ENDURED!
I kept some of my hair - I have straggly locks that hang down that can almost be "justified" if I wear a wide headband. I went to that clinic for 16 Mondays of my life -- mostly spending an entire day there. I hope to never need to go back to that spewing machine ever again. che cung zing, che cung zing, che cung zing ---- I hate that sound.
Today I have to return for pre-rad simulation (couldn't they have done it yesterday?!) And I started 15 dose dense tomography guided rads on July 2. I'm to start Aromasin in the next 10 days.
This Friday I go home. I finally go home and see my family. My sister came to visit right after surgery back in November and my very best friend came to see me in February when I was undoubtedly at my very worst (during EC and zero immune system and a raging cough). My mother had wanted to come out but I held here back. No one needed to see me hooked up to a machine or with my scary clown hair or hear my hacking up a lung. I am pretty sure I will have a total emotional breakdown once I arrive at the airport. In fact, it is probably pretty certain that all of the suppressed tears are just waiting to spill out of me. Once my family sees me, I think so much of this becomes real. My 79 year father was diagnosed with early stage prostate cancer a few weeks back, and now we find out that our family harbors this weird gene mutation. My mother has told me it is her fault more than once.
I've kept up my psychological strength to get me through these past 6 months and 9 days. I've run on adrenaline while wearing a perfect mask (with the best eyebrow penciling I could muster) and told very few people. I hid it from as many people as I could and probably hid a lot from myself as well. This was not going to define me nor did I want to "look the part". I've sweat in that wig that I can't push off my face because the cap is visible - I've brushed off countless people that asked about my new "look" of straightened hair was just for a summer change. I've never let my guard down nor my port show.
My husband has rarely asked me how I feel. Then again, I haven't ask him how he feels. And my 9 year old has never heard of the word cancer .... or chemotherapy or has any real idea what I did on Mondays. All he knows is that I took medicine that unfortunately made my hair fall out but that the medicine is good. And I'm fine and will be always fine. I can only hope that we can all bury these months of almost complete detail of what was really going on somewhere where it will never haunt us.
I have never used the C word when describing my "condition". Tumor yes, C, no. I have a lot of issues to sort out in these next months and years - many physical and I assume the psychological may need to be dealt with too. I understand I will be under constant surveillance (also due to the horrid gene but "best genetic mutation to have" (as someone pointed out)) and I will be in constant fear of the other shoe dropping.
In November I will do prophylactic mastectomy when I do the change out from tissue expanders. I'm fine with that and even anxious to get the other boob lobbed off. I will get my ovaries out too -- why take a shot to suppress them when I can just dump them. They can also take my uterus and tubes and heck, even my stomach if need be. In order to survive I am accepting of voiding my body of superfluous and potentially insidious pieces.
After that full body MRI to check on things (can't do with expanders) and if I want I can could a CT scan tomorrow if it puts my mind to ease. Add in a colonoscopy and an endoscopy (hate those) and maybe a bone density exam? None of these tests shows things, though, until they are quite nasty .... I fear for my brain. If nothing else, I want my brain to always be spared.
My MO is on call for me 24/7 which is very helpful and I have my holistic oncologist and others on my team to always be there.
I just don't have anyone to help me with the fear --- the deep rooted fear that I don't know how these next years will go --- how many there will be --- or how my state of health will be --- or if I will ever have a day that I am able to "forget" this horrid scary journey.
be strong, sisters .... and when we can't be strong .... let's make sure we reach out to each other --- or others who have traveled this path that only the afflicted can understand....
Much love and much gratitude for always being here for me ---
Amelia xx
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Homemadesalsa - thank you for the lovely pictures. Gorgeous scenery on the background, love the bike too, but the puppy is too cute!!!
Paisley, I’ll think about you today! Please let us know how it went. We are here for you!
Amelia, congratulations!!! I also told very few people about the cancer. Some still don’t know... I was feeling very emotional right after I finished my chemo, as I’m sure I mentioned on this board. In fact, the only time I cried during this process was after I rang the bell. Not when I heard the diagnosis, or that they found suspicious spots on my MRI, or through the biopsies, the call backs... It was at the very end.
I found that I’m much calmer now, three months after the end of chemo. This ordeal is already starting to feel like a distant memory, and I’m sure this will be the case for all of us.
In the meantime, my hair is growing, my eyebrows are back, my eyelashes are filling in, and summer is here, so things are looking up. I probably took less than 10 selfies in my entire life, but I’m so happy I started to look, more or less, like my old self, that I took this yesterday and sent it around to friends and relatives. The long hair is a face framer I bought at the hospital. I dropped off my wig at the shop for a hair colour and style, and purchased this to bridge me. Like I said, some people still don’t know and I don’t have the guts to show up in public with no hair, or really short hair...
Lots of love!
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Sending healthy vibes your way, Paisley! It's so scary. It will be good to have some clarity, I'm sure. We are rooting for you, no matter what!
Roxy! You look fantastic. I'm so happy to hear you are feeling better. I am too. My energy is returning, and I'm trying lots of new exercise classes and getting back out on my bike. It's a relief to be able to do some of the things I used to do. My hair is growing in as well--"normal" is feeling a little more normal all the time.
HUGE CONGRATS, Amelia! How exciting to put this in the rear view mirror! You rock. And yes--totally scary to consider the future, but I'm finding one day at a time to be working right now.
My sister had her first surgery, and unfortunately she didn't get clear margins in either breast, and there's cancer in both sides of lymph nodes. She has her double mastectomy and the rest of her nodes out July 3. Please send her good vibes! What a journey for our family. It stinks!
Thanks for being here, everyone.
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congrats Amelia!! Such an amazing accomplishment! Good luck with the rads.
Hopefully things are going well with everyone else!
I had my exchange surgery a few weeks ago, am I’m still dealing with herceptin until January... such a long road, but we can do this!!!
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PET scan came back clear!!!!! No mets. Back on track with the original plan!!!! He thinks I have pneumonitis, so chest CT on Friday and need to see a pulmonologist now. But, heh! No mets! I'll take it! ThNk you for all your positive thoughts and support - it really helped! Glad I can finally relax and think back to the original plan.
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Oh, Paisley, this is WONDERFUL news. I'm so happy for you! Back to the plan!
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We knew it! This is great news, Paisley!
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Okkate75, we are sending our collective good vibes towards your sister!
Take good care of you and her!
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So happy for you, Paisley! I have a back scan Friday. The original pain that caused the scheduling of scan has resolved but I’m still going to get it. I’m glad you can move on ! That was a long wait.
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Paisley and Krose - congratulations on your scans!
Amelia01 - hurray for finishing!!!
Okkate - i think of your sister a lot! Have you started Tamoxifen yet?
update:
I am a week out of radiation. Fatigued alright. It hits my around 3pm and I have to take a nap ASAP, otherwise i don't function.And i need to take care of my 2y.o.
I was told that the first two weeks the fatigue will pick(which i definetely feel right now a week after), then next two weeks - platoeing, and then on next weeks the energy level should pick up.
my oncologist warned me that skin might feel a lot worse on days 7-10 before it starts to get better. My skin held up, however on 3rd day post treatment, I accidentally brushed over my nipple and the skin broke right in the fold at the base of the nipple and oreola. my doc recommended to use polysporin on broken skin. so i did that twice a day on a nipple and calendula homeopathic cream on all breast.
skin is a bit pink still and a bit itchy.but mostly starts to turn brown.
Cannot wait to start the whole antioxidant diet and supplements to help my body to heal - again recommedation was to wait about 2 weeks post treatment.
Also I had a minor chest pain over the weekend(heart?). Mentioned to oncologist. Was told if i experience it again - go to emerge.
I am really straggling with SE of Lupron/Tamoxifen. The night sweat are almost unbearable! they keep me awake! its so unfair that my 2 y.o is finally sleeping through the night, and i am not:)
The doc gave me the prescription for the Effaxor. Apparently its an anti-depressant medication, that has also anti-hot flash effect. I might give it a try...
All and all I absolutely love this group! I know we are mostly finished chemo, but I don't feel like i have connected with anybody else on other forums.
So we rock!
Hug to all, ladies!
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My MO also gave me a prescription for Effexor. Looks like they hand them out like candy! I didn’t really get hot flashes, thoug. I took a couple of pills and felt awful. I was told that it takes a while for your body/brain to stabilize, but I decided not to take it in the end. My mood is fairly stable right now.I’d be interested to see what you thought, Olesya. There are some boards here on anti-depressants, and some women talked about Effexor.
And congrats on finishing radiation!
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I had my first TC infusion last Thursday. Fasted 62 hours prior and 24 hours after. Too long. Will reduce lead-up fast to 48 hours next time. Chewed ice chips and iced hands/feet during Taxitere Also cold capped (Dignicap) and plan to do this for the remaining 3 sessions as well.
Minimal side effects thus far. Low-grade headache has been a constant. Tylenol takes the edge off. Intermittent stomach burning/pain—improving a little every day. Taking probiotics and eating yogurt seems to help. Eating extra to gain back weight lost during fast. Metabolism seems to have sped up, so gaining weight is trickier than I expected. I had several sleepless nights after Neulesta, but last night slept over 6.5 hours, which was a big improvement.
No other side effects yet. Hoping to be able to get through the rest of this lead-up period with minimal side effects and be able to back to close to full strength before infusions #2.
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Hi all- Paisley I am SO relieved for you. Back on the train. Whew. When my PET scan came back clean in January it was a HUGE deal. Makes ALL the difference. Krose- hope yours is just as clean.
Okkate I feel for your sister and for your whole family. So much to go through in a short time.
Roxy you look FABULOUS.
I am done w chemo (as of May 30) and feeling stronger all the time. I go in next Tuesday for radiation simulation, then start my summer job (haha) of 30 trips to and from Idaho Falls- 1.5 hr drive woo-hoo. But if it helps make the odds of recurrence lower, then I am all for it. Although I must admit that, between the 30!!! trips and a recent bout with chemo acne, plus STILL not having hair (including eyebrows and lashes), I did have a bout of depression this week. Ooof. Riding my bike helped, but this is still a LONG journey and hard to remain upbeat all the time. My DH is working full time and having knee pain; I think he has a torn meniscus. So he hasn't been quite as supportive.
Are you all getting your ports out? I can't stand mine- getting it out on July 2- although it feels like an unlucky thing to do with recurrence in mind, I am betting on clean living and strength to keep the cancer away.
And one more question: were you given guidance from your ROs about supplements and anti-oxidants during radiation? I'm gathering info to see the range of advice.
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