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Starting chemo January 2018

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  • Insideout2
    Insideout2 Member Posts: 108
    edited December 2018

    Hello Everyone,

    I had my first post treatment PET scan this week. It came back clear. I will have one done every three months for a while. I will see my oncologist every three months also.

    A few more appointments with my PS and RO remain. A year ago I was getting a test done every other day it seemed to locate my Cancer's origin. I was first diagnosed based on a lymph node biopsy.

    Everyone's posts helped me. Thank you. Looking forward to our continued progress.

    Prayers and encouragement for all.

    Insideout2


  • DxAt37
    DxAt37 Member Posts: 32
    edited December 2018

    Insideout2, I bet waiting for the result of Pet was stressfull! I had my first Mammo and my anxiety was thru the roof! It came back clear too but it was a stressfull experience!

    To all you Ladies out there- have you heard about Hipokrates Health Institute in florida or Optima Health in San Diego? Do you have any opinion, feedback?

    To those of you who haven’t it’s a program where you go and detoxify, only vegan diet, sprouts and wheatgrass, daily enemas (yuck),lymphatic excersises, meditations, etc. it is told it helped a lot of people with serious illnesses and generally yo change your lifestyle.

    I am contemplating going there - if anyone has any experience with these places, please share

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited December 2018

    Wow I thought I replied to the latest roll of check-ins, but evidently not. Glad to see everyone making it through the 1-year anniversary of diagnosis in one piece. Pretty emotional, eh, thinking of what we have all accomplished in a year. What a rollercoaster, eh? I made it through my first avalanche course in decent form- a little slower than usual but I didn't really forget anything. After today's Herceptin and Perjeta I think I have 4 more of those, which is also bittersweet, because they bring such amazing protection. But also a fiery rash that I have been dealing with since June. Scheduled for another round of echocardiograms soon, and for the first mammo since last Dec. I guess I am not too worried- I am hoping that 4 rounds of AC and 4 rounds of TPH and 33 rads, plus arimidex, make my body an uninviting place for cancer to grow any more.

    Happy holidays, friends!

  • Flower216
    Flower216 Member Posts: 87
    edited December 2018

    Hi All.....just stopped by this board to say Hello! I actually have my second treatment on dec 26 and the best piece of advise I got from my dr and the nurses is to drink a lot of water (at least 60 ounces). I tried to get in 80 ounces, and found it easiest to drink at room temperature and with a straw. Good luck to everyone-this isn't a group we wanted to be part of, but its wonderful to know we are all there to support each other!

  • paisley2916
    paisley2916 Member Posts: 55
    edited December 2018

    Hello Ladies!

    It's been a long time since I've posted, but thought I would say hello and let you all know what's been going on with me.

    I finished radiation on 11/27/2018. 30 rounds - 25 regular and 5 boosts. I burned pretty badly - my skin resembled that of a zombie: dead, gray, and peeling off - but has healed up nicely since. I can't seem to get through any of my treatments without some sort of complication, and radiation was no different. I ended up with radiation pneumonitis and pneumonia in my left lung (radiated side). I was at the ER twice and had a course of antibiotics for the pneumonia and have been on steroids for the last 3 weeks for the pneumonitis, as well as two different inhalers. My pulmonologist really upset me when he told me my diagnosis. I was already taking the antibiotic for the pneumonia part and he told me he was going to put me on steroids for the pneumonitis. I asked him how long before I can expect to feel better. He said, "It may not get better...." WHAT?!!! He said, "It's probably all going to scar over. You won't be the same as you were before radiation." At the time, I was wheezing so bad that I had trouble falling asleep at night from the noise, and I was freaking out thinking I'd have to deal with that the rest of my life. Anyway, I am getting better. Slowly, but surely, I can breathe better and coughing and wheezing are much less now. Thank goodness! He NEVER should have said that to me without seeing how I respond to the steroid treatment. Ugh! So, I'll be on steroids into February because he wants me to stay on them until I see him again on January 31. Then I guess he'll taper me off of them if my lungs are good to go.

    Last Friday, I started tamoxifen. Had a hot flash the very next day and my calves were wanting to cramp up. Had a headache and just felt lousy that day. On Sunday, I felt great. Then on Monday evening, I started to see blood in my urine and had abdominal pressure and discomfort. I called my oncologist's office and talked to the nurse. She insists it's not from the tamoxifen and so it's "not an oncology issue" and I should call my PCP. So, I got in to see the doctor and they checked my urine. They said there is no infection, but there is a large amount of blood, so the day after Christmas, I get to go get ultrasounds done of my bladder and kidneys. The fun never ends.

    I can't believe it's been a whole year for us. I can't believe what we have all been through. I'm looking forward to a great Christmas this year and even more looking forward to the new year. I'm SO done with 2018! Bring on bigger and better things for 2019! For all of us!



  • Olesya
    Olesya Member Posts: 109
    edited December 2018

    I posted this in another group on Dec. 8,2018.

    Now slightly edited version is posted here.


    Hello, ladies.

    Just wanted to share my thoughts with you.
    On Nov.19 I had my breast MRI.I got results on Nov.22-Negative! What a relief it was!
    On Nov.28 was my 1st canceversary. On Dec.6th was a year since I nursed my then 22 m.o.daughter.
    On Dec.12 was a year since my lumpectomy and lymph node removal surgery.

    I still have 2 more rounds of Herceptin and 4,5 years of Tamoxifen and 2 more years of Lupron/Zometa.

    In the last month I had been hired as as an supply ECE(early childhood educator) school boards and the EarlyON child and family center. And I had my first cover shifts on Dec.5, 6.
    On Dec.5 I had my concluding session with the counceler provided by the local health team.

    Life is moving on! I feel like all this cancer experience is becoming a faint memory that I want put behind me.
    I have been exercising religiously every single day since Sept. 24, participated in two 5k runs (Terry Fox and Run for the Cure).I feel stronger physically and emotionally.
    During this year of treatment I was very open about my diagnosis and wanted to bring awareness everywhere I went.
    Now that i started a new job i feel the opposite: I don't want to reveal this part of my life. It probably would be different if I went back to my old job to work with people who knew the situation, but in a new place I font want to be seen as a person with cancer.however I am somewhat conflicted, because I feel I should continue to bring awareness in the small community that I live in...


    I think of you ladies often, how for some the fight is not over yet and struggle is real. But each and every one of you is amazing, strong and beautiful fighter! You inspire me!

    This group was an amazing support during the active treatment and beyond.

    Love you all, and wish you Merry Christmas and Happy New Year!



  • Gigicommon
    Gigicommon Member Posts: 58
    edited December 2018

    Hi All,

    I have three more Herceptin treatments to go (final treatment 2/13/19! Yay!!!).

    This experience of treatment has been daunting but I have been very fortunate to not have experienced any significant complications. The strength and resilience I saw on this board has really inspired me (and trust me, I was reading posts DAILY for awhile) and I'm so glad I found this community. Because of you I never felt alone.

    I have found Anastrozole rather difficult but the positive is the joint and muscle pain has encouraged me to exercise regularly in a way nothing else in my life experience has. I'm still stiff after sitting awhile but no one is offering me a wheelchair (yes, that happened a couple times).

    I wish you all the best in the new year!

  • Olesya
    Olesya Member Posts: 109
    edited January 2019

    Wow, it's been a year since my first chemo!

    On Jan.17 I had my last Herceptin. Had it every 3 weeks for 18 rounds.this was a targeted therapy that blocks Her2 receptors and prevents cell growth.
    Also had Zometa infusion.this medication is helping my bones to keep their density. I have to have it every 6 months for next 3 years. Next round is on July 16th.
    It knocked me out for a couple of days: made me very tired and my head was foggy, dizzy and heavy. But, I didn't have a fever and my body didn't hurt all over, as it was last time.
    On Tuesday I am getting Lupron shot ( hormone therapy that keeps my ovaries dormant, and basically keeps my body in menopausal state - hot flashes are my best friends).this stuff I get every 3 months for 3 years as well.
    On Jan. 28 I am getting my port out and meeting my oncologist.


    ...And it's been the heck of a year!

  • Roxy13
    Roxy13 Member Posts: 116
    edited January 2019

    That's great news, Olesya! And happy new year, everyone!

    Yes, it's been quite a year for all of us. It feels like so long ago we were starting our first chemo... I'm trying to stay vigilant - continue to exercise, eat properly, etc., but I have to say - I'm afraid that I put this behind me a bit too easily. Almost like it was the flu.

    Hope everyone is doing well and done (or almost done) their treatment.

    Stay warm!

  • murfy
    murfy Member Posts: 258
    edited January 2019

    Wow, so good to hear from you ladies! Especially that you are doing well. Me too. Have found out that I will probably be on AIs for 10 years, but SEs are livable. November 2019 hope to celebrate 2yr remission (knock on wood). Can then get that long-term care policy...

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited January 2019

    I started late in January (the 25th), and had the whole monty (4 AC, then 4 TPH), finished May 31. Feeling strong now, but it hasn't faded into history as I am still finishing up a year of Herceptin and Perjeta, which gives me a nasty rash. I have been itching since late June, when the pre-med steroids wore off. I did one course of Prednisone, which gave me some short-term relief, and now I am using the Triamcinolone, but it puts cracks in my fingers. Hot showers fire it up, as does drinking wine (the histamines!). Topical benadryl helps, as does benadryl tabs to make me sleep. I'll be ready to see HP and the maddening itch go away in March.

    But I am not missing my absent boob, and 6 months of gym and working with a coach has gotten me strong. Back at work teaching avalanche classes and ski guiding, which is really gratifying.

  • okkate75
    okkate75 Member Posts: 75
    edited February 2019

    Great to see everyone doing well! Me too. I'm coming up on the anniversary of my last chemo. My sister is finally through treatment and we're hoping for a lot less cancer in 2019. I'm fully engaged in my current project: learning to run. Getting back in shape has been really fun. Next check up is the end of next month! Fingers crossed for good reports for us all.

  • princessbuttercup
    princessbuttercup Member Posts: 161
    edited February 2019

    Good morning everyone. Also doing pretty well here, except for the exercise part. I just can't seem to get that going yet, for many reasons (tamoxifen, illness, a hard fall at home, etc).

    But what I wanted to say was that going in for my one-year follow up with the breast surgeon was fantastic. She showed me the mammograms from last year and this year side by side, and seeing that tumor gone in the scan from December was the best possible medicine. It took away all doubts in my mind that that thing is history. Now to focus on the future and getting my fitness back on track in order to prevent a recurrence.

  • okkate75
    okkate75 Member Posts: 75
    edited February 2019

    Yay, PrincessButtercup! Congratulations on passing that first big test.

  • princessbuttercup
    princessbuttercup Member Posts: 161
    edited February 2019

    Thanks, Okkate!

  • Insideout2
    Insideout2 Member Posts: 108
    edited May 2019

    Hello,

    Just checking in on everyone. Last year this time I was finishing chemotherapy. This thread offered so much support. Wishing everyone the best.

    Insideout2

  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 20
    edited May 2019

    Hello! I passed my one year out from the Big Chemos May 8th. What a difference a year makes. The only side effect I have left (besides the ringing in the ear from the Carbo and some distance vision loss) is that my hips are incredibly painful. I'm working on getting that taken care of.

    Otherwise, just happy I don't have to be at the doctor's every week! I don't go back to the oncologist until September!!!!

  • Roxy13
    Roxy13 Member Posts: 116
    edited May 2019

    Hello Ladies,

    It's been a while. I can't believe I like seeing "breastcancer" pop in my inbox, but I was glad, and glad this thread came back to life. I sure found a lot of support here that I didn't have from those who did not go through this.

    I hope everyone is doing well. Congratulations, Insideout2 and DiagnosisDistruption on your one year anniversary!

    My hair is growing nicely and I finally lost that cancer face. Yesterday, I had nipple reconstruction surgery. I'd been debating whether I should even bother, and decided to go for it. I still have the dressings on and haven't seen the results. I'm scared to look, to be honest. I don't expect that my breasts will ever look natural... Before my surgery yesterday, I was waiting on a bed, and a lady in the bed beside me was going in for a mastectomy. In the recovery room, there was another (or the same?) lady who was coming out of a mastectomy. I was thinking that was us not long ago. What a journey...

    Love

    R

  • murfy
    murfy Member Posts: 258
    edited May 2019

    Wow, love hearing from my support group and happy to hear you're all doing so well! Passed my 1-yr on AIs anniversary with flying colors and docs say I'm doing great. Packing for another 6 mos in Alaska. Yay!!!! Take care all!!!!! <3

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited May 2019

    Hi friends- glad you are doing so well. Everyone said "treatment will be over soon, just hang on," and they were right. Crazy.

    I am working with a coach, getting back in shape. Not much side effect from the arimidex, just a little joint ache. I am slowly starting Nerlynx, adding a pill a week, as my MO strongly suggested it, and the D is under control with Colestipol. I have bouts of worrying about recurrence, but otherwise live my life. Front and center now, however, is a strong sense of gratitude and understanding that our time here is short, regardless of medical conditions.

  • Gigicommon
    Gigicommon Member Posts: 58
    edited May 2019

    Homemadesalsa,

    It is good to hear an update from you. I never posted much but I read the boards religiously. I ended treatment on 2/13/19. It was quite a journey but we made it through. I pray that Nerlynx treats you kindly.

  • okkate75
    okkate75 Member Posts: 75
    edited May 2019

    Hi, All! Glad to see so many doing so well. I'm heading in for my yearly MRI on Thursday, so the nerves are starting up again. I know whatever happens, I can handle it, though. I just got back from a week hiking in Utah, a trip I postponed for year because of cancer. Truly grateful to have gotten to do that. I'll check in and let y'all know how my scans go. Love to you all!

  • DxAt37
    DxAt37 Member Posts: 32
    edited May 2019

    Hello Ladies,

    I am happy to see everyone is doing ok!

    I am hanging in there, I have roughly 9 years of hormone therapy left. I am taking monthly Lupron shots and taking anastrozole.

    So, I am officially a menopausal lady at 38. I have mean hot flushes and still looking for a good way to control my weight as menopause is doing me no favors in that field. But... that also means I have no PMS, no periods and no problems, leaks etc. That is a big plus.

    Other than that, life is good. I stop to smell the roses 🌹 more often. I try to spend as much quality family time as possible and overall be good to myself. I believe it is a big part of getting better and trying to diminish recurrence chances. Life is perfect (or would be, if I could only lose some weight!)

    Best wishes and good vibes :*

  • Amelia01
    Amelia01 Member Posts: 178
    edited June 2019

    Hi ladies,

    I'm going on a year out from chemo and with my cold capping experience and a ton of money spent on extensions, I was able to ditch the wig last august and have been sporting my 1980s rock band mullet every since (lots of hair loss on top and at the nape of my neck, so a double mullet). I haven't been fooling anyone with my dumb looking hair do, but alas, it was more me than the short cut. Getting back to "normal" was just so important for this ugly ugly journey.

    My body aches on the exemestane are a nuisance. I always remind myself that it is better than cancer.

    Being a mutation carrier, I had a prophylactic mastectomy last november while doing my expander exchange. They were going to do nipple sparing but found some LCIS cells during in-op biopsy so off that went. I guess I prefer to look symmetrical and not have any nipples than one shoe and one slipper (sounds better in Italian). Then just last month I discover on my own that the implants they put in in November were no longer legal to sell as of December (the Allergen textured ones that have recently been in the news for the worldwide "recall" except they dont' say recall because that implies they are no longer safe and have to come out $$$$). I am probably going to have them out this coming November. I really don't want to have any added potential issues.

    In February I had my ovaries and tubes out, so I'm done with the Lupron shots and happy to have one less drug to take.

    The tummy tire is no fun ... hear you DxAt37 on the weight gain.

    I started to live again after a full body MRI in February which was clear. Of course I realize that the Lobular is sneaky and doesn't always image well, but it was essential to not have that daily fear. Not a day goes by that I forget about the possibilities, but at least I am enjoying life.

    I've pretty much stayed off these boards because I was horribly stalked by some nut case on here.

    I've thought about you all and wish everyone many carefree and light-hearted days.

    A big shot out to Roxy ---- lots of hugs to you.


    amelia xx

  • Insideout2
    Insideout2 Member Posts: 108
    edited July 2019

    Hello Everyone,

    Just checking in. Had a PET scan in June, all clear. Getting ready for DIEP surgery next week. This year is one adjusting to life after treatment.

    Wishing everyone the best.

    Insideout2

  • murfy
    murfy Member Posts: 258
    edited July 2019

    Great news, Inside!! Good luck with your surgery!

  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 20
    edited July 2019

    Getting back into the swing of things. The other day I used the phrase "when I was in chemo" and it felt very surreal, like I was lying about it happening or something.

    The only residual of chemo I have going on now is some hip pain. Had an MRI, nuclear bone scan and CT, but there's nothing scary. Diagnosed with IT Band Dysfunction and am now in PT. Therapist says my core muscles suck (despite yoga 2x a day, weight bearing exercises, and 30 minute daily walks). Six month mammogram in February came back clean.

    I am enjoying summer vacation because last years was filled with radiation treatment.

  • paisley2916
    paisley2916 Member Posts: 55
    edited July 2019

    Hi Ladies! Wow, it's been a while since I've posted....

    Finished rads last november - ended up on steroids for 4 months due to radiation pneumonitis and pneumonia in left lung. Also had to do PT again after rads because I lost range of motion in my arm again. Still get shooting tingling/numbness into my fingers when I move my arm a certain way. Radiation was definitely more difficult than I anticipated!

    Been preparing for DIEP Flap surgery. I needed to lose weight - lost 33 lbs, eating healthy, exercising. Scheduled for August 5th. Had Pre-op and CT scan last week and saw my PS yesterday. Got bad news.

    My blood vessels on my right side of my abdomen are not sufficient for DIEP. I'm devastated. I didn't want to use muscle and I didn't want to have implants or ANYTHING foreign in my body. Here's the options he gave me:

    DIEP on the left side (can't have tissue expander or implant because of rads). Right side option #1: could try for DIEP, but if he can't find a good blood supply, he would end up doing a Pedicle TRAM flap which would take the entire muscle on the right side, tunnel it up to my chest and would require mesh in my abdomen to replace the muscle. Even then I'd still have a higher risk of abdominal bulge and would have weakness in my abs. Right side Option #2: Expander to implant. Right side Option #3: LAT flap without an implant - but again would lose muscle from my back.

    I can't believe this. I've thought about this surgery for a year - had my DMX last August. Physically have been preparing for it for 6 months and think about it every day - all the time.

    I'm considering calling The Center for Breast Restoration Surgery in New Orleans on Monday. They have a procedure called APEX that is very similar to DIEP, but they don't touch the muscles and they somehow re-route blood vessels. Not sure if I would be a candidate, if insurance would cover it, not sure I want to travel so far away for surgery, but I've heard really good things about them.

    I've been really enjoying life - feeling good, tamoxifen hasn't been too bad, feeling grateful and appreciative of everything. But that appointment yesterday really knocked me down emotionally. I got through my double mastectomy, and treatments with the comfort of knowing I would be put back together again. I feel like cancer just sucker punched me yesterday. I thought DIEP was goign to be challenging - now these options make it even more challenging.

    And if I hear one more time that I am a "rare" case I'm gonna puke. This is only the third time my PS has seen blood vessels like mine. I was the only one in my oncology office (8 doctors) to ever get taxol induced pneumonitis. I've had complications with every part of breast cancer treatment (except tamoxifen so far).

    Sorry this is so long. I really needed to vent. Thank you for listening.

  • Roxy13
    Roxy13 Member Posts: 116
    edited August 2019

    Dear ladies,

    I hope everyone is well and enjoying what's left of this summer.

    I'm currently in Florida with my family and will visit NYC next week. Yay.

    Life is good, or was, until I found some lumps at the old cancer site. They feel soft, and are very mobile, around the implant area... My BS was on vacation, as was I, so I made an appointment in September, right after Labour Day. All was good when I went for my checkup with the MO in June... These showed up over night.

    Ugh. The worry... The panic attacks... Back on these boards... I hope it's nothing, but who knows...

    Anyway, I had to vent. I haven't even told my family anything.

    Hope everybody is doing well and has peace of mind.

    Lots of love

    R


  • erob321
    erob321 Member Posts: 59
    edited August 2019

    Roxy, so sorry to hear of your new concerns. Sending good thoughts and lots of love your way!

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