Starting chemo April 2019
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God willing, I will cross the finish line this Friday! Lol I begged my MO to schedule the port removal ASAP!
Time to move on to rads.
Hope everyone is doing well 💕 MM
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MsMarie, Looking forward to hear the good news on Friday !!
Princess, were you able to get the Taxol today??
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Yep, got in my last treatment, FINALLY. And Marie, onco kept my port in for 2 years. Didn't really mind going in for monthly flushes the first year, was actually rather comforting to still be on everyone's radar, but my 2nd year out (when I moved from check-ins & CTs every 3 months to every 6mths), I started getting wicked panic attacks every time I had to go into the cancer center even for just the port flush. Didn't tell onco about that, though. My GP refills my xanax scrips, but my records are all integrated so I imagine she knew, LOL. I honestly expected to keep the port for the full 5 years, but maybe my freak-outs played a part in getting it out sooner, IDK. Never asked. I was so relieved she said I could have it removed, I wasn't about to question it.
Steroid crash is hitting early. I feel cheated! But I loaded the dishwasher today and made fried pork dumplings from scratch to go along with lo mein and steamed green beans for dinner. So I was functional before the sentinient recliner blob-ness mowed me down. Let the suck commence! One more hell week and then is all up, no bracing for worse ahead, just getting stronger and steadier again. WOO HOO!
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Congratulations Princess!!! Whohoo!
So are you done with all treatment? Continuing with hormonal therapy?
MsMarie - almost there! Radiation will be a breeze.
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Onco said next step is for radiologist to order another pet/ct. CT showed the tumor was gone 2+ months ago, but of course the pet is more sensitive, will help target rads and make sure nothing else has reared its ugly head since then too. Don't see my onco again until the 24th, though, supposed to have a little while for rest and recup, which is very welcome. I am officially on chillaxin time!
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Well deserved.... so happy for you!!
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congrats Princess!
I finished my last taxol today! Such a joyous day. My husband, kids, parents, brother and nephew were there to see me ring the bell. Also had a couple of BFFs in person and one on FaceTime.
I see my MO next week and soon my RO.
Question: for ER+, does tamoxifen start now or after rads? Guess I'll find out at my appt next week.
i saw a hair poll topic posted that I'll probably go post on. Mine has come back in mostly white 😞. I have almost an inch in some places, 1/2 inch in other places. I think the cold capping is what is kickstarted my growth. Even though I lost most of my hair, regrowth started early on during taxol. What about everyone else?
Love and healing to all! MM.
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Such good news hearing everyone finishing up chemo and moving on to what is next!!
I have 8 radiations under my belt. 17 more to go. Although it is a pain going everyday, everyday is one more closer to the end unlike chemo where you had two weeks before you could count another one done. So far it is not bad. On Fridays treatment the pinkness lasted a little longer into the day than previous days and they say by end of next week that could ramp up a bit. I moisturize, moisturize, and moisturize and try to keep hydrated. Does any one else feel like they are always thirsty or is that just me?
I had my first Zolodex injection and have not had any more side effects than I already had from being thrown into menopause. I have to have that every month for about two years and then my MO will take me off to see if I have gone into menopause. Since I am 53 it can't be that far away. I do wonder if I should just have my ovaries out and not have to have the monthly appointments but would love not to have another surgery.
I will start Arimidex after radiation is over as well as Zoldronic Acid. Praying for no side effects from these two as well!
My hair is growing. Not sure if it is even a 1/4 inch yet but it is growing. I do see some darker coming in too, not just the white. My eyebrows and eyelashes are at a stand still. If feel like my skin looks better..healthier and more colorful than during chemo.
Fac03 - let us know how taxol is going!
Love to all and keep on truckin'!
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Our thread fell down to the second page, we can't have that!
How is everyone?
Rads gals, how is that going? Looks like a Sept start for me.
One very odd SE I have now is swollen ankles. I have read w Taxol it can happen. Figures it happened to me once I finished treatment.
Hope everyone is doing well! MM.
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hi MsMarie!
I am 12/20 with RADS and no side effects yet. My energy is back to normal and I see eyebrows and hair beginning to grow back. The tough part is emotional, for me; I can have a few days or even a week when I don’t think about my fears and feel fine, other days worried and low and struck by how things can’t be the same again. I’m starting, after eating badly during chemo, to improve my diet and I’m exercising most days, that helps.
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I am almost back to my previous levels of bad, LOL. This last treatment kicked my butt! I was so weak, I could barely walk from one room to another in my house and trust me, my house isn't that big.. Before my last spa day, I could wak around the grocery store at least. My goal was to be strong enough to do that again by tomorrow, Friday. Not quite there yet, but I think I will be before the weekend's over. Figure another week or two before I'm more functional.
Haven't heard from my radiologist yet. Onco said he'd schedule a pet before the consult, but nothing so far. I see her on the 24th, though, maybe I'll get the appointments then.
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Hi MsMarie, I am 3 weeks out from my last taxol and start rads next Wednesday. I thought I would feel great by now but I still get tired really easily and wake up achy in the morning. Like Princess, for some reason that last treatment kicked my butt. But everyday is a little better. My taste is back and I don't have any nausea. My hair started growing back towards the end of taxol but is white and fluffy
I still have a few eyelashes hanging in there but I am still losing them and I don't see any new ones yet. I hope they start growing soon!FarFalla, I am having the same emotional days. Some days I feel great other days I just feel depressed and don't feel like doing anything normal. My friends all think I should be getting back to normal now that chemo is over and I am not so sick. But for me it is not over, I still have 6 weeks of radiation, then reconstruction surgery, and starting Tamoxifen. I know I have done the hard part with chemo and it won't be too bad and I will get though it. It just seems so overwhelming!
I am so thankful for these boards where we can talk about these things and understand what we each are going through!!
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Hello to all!
Glad to here that many are finished/finishing up chemo and moving on to next steps. What a long process.
I am 8 weeks out from last chemo and completed 4 of 21 rads. So far so good as far as radiation goes, just taking it one day at a time. I am happy it is Friday and that I can take a break from going to the hospital everyday. Overall feeling pretty good physically. Wish I had more hair though. It is growing but still patchy and white but some darker stuff is coming. It seems like my eyebrows are getting thinner which was unexpected ?? at this point but I do see new growth there too. I still have some eyelashes holding on but no new growth. I guess it all takes time. Patience is tough.
Have a good weekend!
Laura
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Just checking in to let y'all know, I'm becoming more functional again, woot! Made dinner today, just shepherd's pie, but it wasn't some horrid convenience/pre-packaged food or takeout which is extremely welcome. Unloaded and loaded the dishwasher too. I'm moving around a lot better. Still not back to normal, but I'm getting stronger every day. Taking my life back, one baby step at a time. :-)
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So good to read and catch up on everyone's progress.
The post treatment blues really hit me hard. I had so much good news, in the past few weeks but am more dysfunctional than ever.
What is great is that the third opinion really did matter on both my continued chemo and radiation! No more chemo and no radiation. I was (still am a little) stunned! You would think I would be jumping for joy which i had moments of but at the same time it was all so sudden and anti-climactic.
So I feel you Sparkle and Farfalla- The emotions don't stop once the chemo does.
I do have my first Zoladex next week and I am happy to hear from you BAM that it is not any worse than the chemo induced menopause.
I have my exchange surgery and oophorectomy planned for mid-October. That is the last of my "treatment" other than an aromatase of some sort. I am hoping to have my port out then too!
Princess- you continue to amaze me. You have never skipped a beat and have had the most positive attitude despite the many challenges. It was good for me to come back and read and be reminded to stay more focused on the positive!0 -
Salty, I'm with you on the anti-climatic. Saw my onco yesterday. Last time I saw her, on my last spa day, she said my radiologist would call with appointment for another pet/ct before rads. Didn't happen so I thought, okay, maybe I'm getting those appointments when I see the onco. Uh...nope. Qfter the CT a few months ago showed the tumor was gone, radiologist was reluctant to do rads given where the tumor was located (right next to my jugular) unless a pet showed there was something there TO nuke. Onco said my insurance company was probably fighting against the pet because I'd had the clear CT. So...she said she'd check with the radiologist, but if I had rads, good. If I didn't have rads, also fine. Unless I hear from my radiologist, I'm back on my old 2015/2016 schedule of monthly port flushes and monitoring CTs every 3 months. Barring symptoms cropping up that need checked out, I'm good until November.
Can't say I've got the blues. Mostly janxious, but I can cook again so healthy coping mechanisms FTW! According to my chemo diary from 2015, I should start recovering my sense of taste in a couple weeks. Maybe a month after that, the word-dropping should ease up enough for me to be able to work. Slowly. I'll rely more on my editors for this next one too. But being able to write again...It'll help with the anxiety. I had a short contemporary in the pipes when everything went wrong. Of course, I have to finish that project first, but I foresee something dark and dystopian after, LOL.
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Dark and Dystopian seems perfect!
Doesn't this all make your head spin? Who am I waiting to hear from and what and why? What comes next, anything?
Ok- so when will I hear from anyone again? Do I keep track?
How am I supposed to be "watching" but not overly worrying?
I would love to keep up with whomever is interested in doing so in the April 2019 FB https://www.facebook.com/groups/396825287612183/
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Just caught up with everyone. We all have been through so much these last four months! I hope people continue to stay in touch either here or on the facebook page.
I have two more radiations to go. My skin is fairing pretty well. The worst side effect is a large painful lump feeling in my throat when I swallow. I am having my chest wall done and this lump is because of that. I did get a prescription for something the other day that is helping. Seems everyday at the radiation center there is some one new starting and they are booked up everyday. Frightening! I will be so glad when I don't have to go from work to radiation!
Next week I have bone density scan and I get my port out. I also get my second zoladex injection and I think I will start the Zoldronic Acid and the hormone blocker next week
Princess - so glad you are feeling better. You are amazing!
Farfalla and Salty - I appreciate the heads up on the emotional side of things. Right now I am feeling so excited to be done but am anticipating a mix of emotions. For months we have been so focused on the next thing and now when were are done we have time to really reflect on what in the heck just happened to us and to worry about the future. I don't know if a breast cancer support group would be helpful? Part of me wants to totally forget this whole thing....as if I could with monthly injections of Zoladex, medications to take, scars and little hair but another part of me likes talking to those who have been through it too.
I would love to hear from others who haven't posted for a while. I hope that just means everyone is out enjoying life!
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hi Bam320!
I was done with radiation August 27, and barely have some pinkness. I have been exercising and got all my stamina and strength back by a month pfc, which is more quickly than I expected. I don't feel any fatigue with radiation.So physically I feel fine. Hair is growing back, eyebrows and lashes almost normal again.
But emotionally I feel scared, and I'm still trying to figure out how to come to terms with what's happened. I'll be reading a book or watching movies to distract myself and then someone will say , look it's not cancer, it's not chemo, etc.and I remember that I've joined this club. I was able to work through treatment but now I feel like I don't have any excuse to not be 100% back but I don't feel that mentally. And I'm already on an antidepressant!!
So it's a mixed bag. Can't figure out what balance of realism, denial, etc I should be settling on. Especially with my triple negative diagnosis, with the throwing of the kitchen sink in terms of treatment , but then you're done and you just wait to see if it comes back. I'm thin and I exercise a lot but my diet isn't perfect and the idea of eating v low fat, no alcohol, no sugar is really tough for me. Which I feel guilty about . I have my follow up with the oncologist next week and I have a long list of questions for her about avoiding recurrence, and I think she'll just confirm the exercise and diet recommendations but that there's nothing else to do. I've been reading everything Santabarbarian writes about that but I don't think I can stick to such a good diet. I'm also a type 1 diabetic so I would typically avoid refined sugar and carbs but would enjoy cheeses and high fat foods. And I'm a bit on the too thin side to begin with so I feel like there is literally nothing left to eat. See? I'm feeling sorry for myself, even with my early stage diagnosis, which makes me feel—guilty!!! Arghh.
I am following everyone's posts and get great comfort from that. I'm not on Facebook.
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Just catching up.
I had my mapping simulation last week, mid Sept start for rads. I will have 33. I hope I can do it, it's not the SE I am concerned about, it's the mental challenge of going every day while trying to work. My office is an hour away from the clinic. Traffic is horrid. Will take some mental gymnastics to get through the almost 7 weeks. I know it will be a grind. But I know I can do it.
My techs are young too. One was training during the simulation. But they were very kind and gentle and explained everything to me.
My emotions once I started chemo have been pretty rock solid bc I knew I needed to stay strong, eat well, exercise, get through it. This lag in between chemo and rads hasn't been as solid bc I have nowhere I have to be for treatment. Too much time to think about all the what ifs. I can't say it's a fear, but definitely has caused some anxiety.
Farfalla, I'm not triple neg but I have read a lot of Santab's posts too. I am treating this disease as if it's the most aggressive beast. I get access to a free dietician through the hospital and she's been great so far. I will be switching my PCP to a lifestyle internal medicine physician. She's not fully integrative, but she believes in a plant based whole foods diet. I'm going to give it a whirl. I will not be a complete freak about diet, will allow some cheat meals, wine or a rita on occasion. But I am dramatically reducing/eliminating animal products, gluten and sugar. I don't know if it will help with recurrence but I believe it will improve my health. I need to lose 20-ish lbs and the tamoxifen won't be helping that cause. I also am interested in getting the right balance of supplements, Vit D, coQ10, omega 3, curcumin, magnesium, etc.
For many, change in diet can add more stress after treatment but I am one who needs distraction to get my mind off of the "wtf just happened to me" emotional state we all struggle with. My new goal will be "how did I improve my health today?" I am committed to making better choices. That's all we can control. Farfalla, I love cheese too! Right now when I treat myself to cheese, it's the Tillamook medium cheddar. Will be a challenge to let that go.
So good to hear some of you have your eyebrows and lashes back! Not me, 3 weeks PFC and no signs of growth there 😩.
I continue to pray for those still in chemo, rads, and those who have more surgeries ahead. Please come here and check in regularly. I'm not on the fb page bc I still want to be somewhat anonymous. Not a huge fan of social media and the mass data they are collecting about us.
Keep fighting warriors! MM
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Hi all, It’s been awhile since I posted last. Been super busy which is good. I finished my radiation July 24th. Started the AI two weeks after that. All in all, radiation went well. Just some redness and darkening of the skin. My treatments were just completed when my breast started to get irritated. I had 16, and 4 boosts. Now it’s starting to look normal again.
Also had a Zometa infusion for bone strength. The next day felt like the flu hit me, but it passed after 24 hrs or so.
The AI pill so far has been ok. I do notice I’m stiff I. The morning and have an ache in my left foot, arch area. It’s seems to get better as I get moving and wear some type of shoe with support. I’m constantly bare footed and that doesn’t help it.
My hair is coming in. Eye brows are still there. Have noticed recently my eyelashes are getting really thin. Seem weird after finishing chemo back at the beginning of June.
I’m pretty much back to my regular schedule and energy level, with only an occasional day of fatigue.
Have an appt tomorrow for BC survivorship. So interested to see what that will be about.
So much to do with all these treatments, feels good to not have so many appointments each week. Keeping busy has helped me the most.
Best wishes for those still on the journey in active treatment! Think positive and stay as busy as you can to keep your mind distracted from the icky stuff.
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Hi all,
This week I finished my 25 radiations. It felt great to be done. That day I also had my first infusion of Zometa(Zoldronic Acid), my second Zoladex injection and got my prescription for arimidex which I will start today. I only have to get the Zometa twice per year. I did not have any side effects from the Zometa. They did give me low dose steroids with it so maybe that helped? I aIso had a bone density test which was fine and a ct scan that was good.. I also got my port out yesterday. Busy week!
I think I will likely have my ovaries removed instead of continuing to get the Zoladex every month. My MO's plan is to have Zoladex for two years and then stop to see if I have naturally gone into menopause but two years is a long time to go every month. I will continue with the injections for a few months before having my ovaries out. I need sometime to recoup from all of this. Going back to the hospital yesterday to get the port out was pretty anxiety producing for me. I still have to have surgery on my left breast to have it better match my right and the thought of that stresses me out. That won't be for a few months and I am sure that I will be ready when the time comes.
My energy level is pretty good and have been working out more. My hair is coming in but it is still too short to tell if it will be curly or not. My eyebrows came back really quickly and my eyelashes are getting there.
MsMarie - can you do radiation in the morning before work? I had started my treatments in the morning but when I went back to work for the school year I went after work. In the afternoon they were often behind schedule and I sometimes had to wait up to an hour past my scheduled time. That got old real fast! The "nice" thing about radiation is you can cross one off each day instead of waiting two weeks to count another one as done.
DebC - glad to hear things are going well. You look great! My hair is at about the same place yours is.
Farfalla - This is a weird place to be in with treatment done, reflecting on what the hell just happened and what is to come. I find myself feeling excited to be done but then the what if's creep in. I have been busy with work and our kids that sometimes I don't know if I even have to time to really process this all and maybe that is a good thing.
I hope to keep checking in with everyone here!
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Just so you know, I still eat cheese and milk and meat-- just way less. I am getting used to the largely-veggie eating but I will throw some feta in my salad or some slices of grassfed organic steak, and i will have a little milk here and there. The recomendation I got is to keep fat less than 20% of calories. I still splurge a bit here and there but I keep an eye on that total. It gets easier as I get more accustomed to it. I have great farmers markets in my town and if I give myself a day to pre-cook the veggies that need it (roast the beets, etc) then I basically have a salad bar in my fridge, which is pretty easy.
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yay for Farfalla, Bam and Debra finishing rads!
I will likely start rads sometime this week or next. Bam I'm hoping to go first thing, but even so, they don't open until 8:30 and so the earliest I'd get out is close to 9:00, then an hour to the office puts me in at 10:00. I tried to see if they'd let me go first thing AM M-W and then last in the day Th-F, just to give me some flexibility with meetings. They didn't like that idea, they want it at the same time every day 🙄.
I got my port out last Thurs! Happy to have that bad boy out and I got to see my BS again. I really like him although I hope I never have to see him as a patient again. He told me he was happy I was firing him, lol!
SantaB, thanks for sharing your diet tips. I'm not changing my meat and dairy protein intake until I finish rads. But I will try to include more plant based protein. I will start tamoxifen right after rads and I fear I will gain weight without some dietary intervention.
I'm proud of all of us for hanging in there with our treatments and surgeries. It takes such courage to fight this mighty beast👊.
Hugs to all! MM
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hello my long lost chemo sisters!
I’m smack in the middle of my first full weeks of rads. They made room for me at the 8:15 slot so I could get on with my day. Today was treatment #5. The traffic getting there and over to my office is the worst part.
I’m feeling better each week post chemo. I so wish my eyebrows and lashes would grace my face with a return. Some lashes are coming in but no brows yet.
So this will be my first Pinktober, as it will be for most of us in this thread. I have been reading so much negativity about it in other threads. For me, Pinktober 2018 was what prompted me to get my overdue GYN appointment. I’m grateful for the campaign and I know it’s not perfect, but it did what it was supposed to do in my case. I’m not the type to sport obnoxious pink shirts. But I’m not about to criticize a movement that reminded me to schedule the mammogram. I hope more women than ever are inspired to get their screenings.
Hope everyone is doing well, would love updates! Hugs, MM
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Glad things are moving along for you Ms. Marie. My eyebrows came in maybe half way through radiation. My eyelashes are back for the most part but seem short still. I don't even put mascara on them yet because I don't want to hinder any progress with using it and then taking it off at night. So happy to have my brows back!
As for Breast Cancer Awareness...I too am not one for wearing pink, having pink ribbons on my car and going to all the walks/races. I have co worker who had breast cancer and asked if I am going to the walk in October. I am not! I have been in touch with my school districts wellness department and they are going to put myself and another coworker's story in their newsletter. That is it for me. I will talk to everyone I know about getting their mammogram but no pink ribbons for me.
I am going to post a hair picture later after work. I wish I had more progress in that area but am hopeful that by Christmas I may be able to go wig free. I may even miss the wig a bit. It really is so easy in the morning getting ready for work!
Have a great day!
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Hi Everyone,
For a while after finishing up the IV antibiotics (home therapy post sepsis) I was nervous and scared that cancer would come back. Which it still might... 2 weeks ago I had a repeat CT of my chest to make sure the sepsis had cleared my lungs. Then they found a lesion on my thoracic spine. The dread came flooding back. Much to my relief, the follow up MRI showed that the lesion was benign. whew! I suppose the fear of cancer returning never goes away.
Continuing with the AI, tolerating the joint stiffness. Turmeric supplements help some. Hot flashes are back with a vengeance. Overall, side effects are tolerable. I'm thankful to be alive!
My hair is coming back and looks messy all the time. I supposed it will get more manageable as it gets longer. Eyelashes and brows are back. Yay!
It's great to read your all your posts. I hope you're all doing well and wish you the best always.
Happy Healthy Fall!
Ro
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Bam, you were spot on, my eyebrows are almost back! They appeared about 6 weeks PFC.
RO, you’ve been through so much. So glad it was benign! Just keep the faith. It is tough trying to look forward and not back. I have to start tamoxifen soon, hope I tolerate the SE as well as you are on your AI.
I asked my RO if anything nefarious was seen on my lungs when they did my CT. I’m sure they would have told me had they seen something. All clear. I guess it’s the only imaging I’ll get outside of mammo/ultrasound of breasts unless I present with any problematic symptoms. I’ve got a lot of living to do so I can’t let those thoughts loom. I have heterogeneously dense breasts so my anxiety will be high every time they get imaged. Just have to keep positive thoughts.
10 rads down! Getting closer to the end!
Hope everyone is doing well! MM
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Just a Hello to you all! Such a great bunch. I've been reading about everyone a lot today. :]
Everyone seems to be doing the best they can...Yea.
I'm Recouping from Diep Flap Double . waiting on some tests but all is well. and taxol was a bit rough on the ole 12 string fingers..(feet too) Starting the Examestane today for the next Ten years..Sounds like a punch line right?
I made my walks in the hospital to a board where you wrote on a paper and stuck it up there. Kinda like in a Chapel. So people could pray or think good thoughts and ALL of Crazy town here has been prayed for and sent awesome thoughts from all walks of life. and of course, from Hippie me.
Double MS, Chemo, Diep Flap.. done. Anyone with any questions about any thing, Id be happy to help if I can. But, I see that there are so many helpful awesome constant people .. here helping.. Thank you all. Helped me in so many ways.. Very Special.
Oh and no eyelashes or brows but I have the whitest grey hair Well a tiny bit but ..One more Anderson Cooper joke!!! Tee hee.
Lots of Hugs and Love,
Dorene
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This was very useful thank you
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