Starting Chemo March 2015

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Shaz- way to GO! So proud of you!

    BB- thinking of you right now.

    Trvler- I can only answer for myself as far as the proactive head shaving thing. I had read so many stories of that moment when someone is standing in the shower washing their hair, and it's coming out in clumps in their hands. Or something similar. It seems that is often the trigger for a major meltdown when they've been (in their own view) "good", "strong", "brave", up to that point. Which of course just surviving this they were. I felt very vulnerable, like a sitting duck, just waiting for the inevitable. I know there is some chance it wouldnt happen. But I wanted, for once in this waking nightmare, I wanted to be the one to say when. And where. My terms. Not having to wait a week until my hairdresser could fit me in. Or worse, go to someone new. At a new place where I had no comfort levels and nobody knew me.

    A very personal decision. I know it's not for everyone. We all have our tricks for dealing with ourselves. This was just something that felt right for me

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Italychick- if I had the magic lantern today, I woukd wish for each of us here in the class of 3/2015 to have a friend like Cheryl. She sounds amazing. Please tell her thank you from me.

    Katy

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Reporting from chemo. They just ran my blood tests, Herceptin is coming first, will take 90 minutes. Then premeds , and then Taxol for 60 minutes. I'm still terrified. Will check in later.

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    Trvler - I have super long hair, and I am getting it cut this weekend - first chemo was Monday. The chemo facility said cut it short (like a few inches), but don't shave, etc. yet or I could end up with infected hair follicles. I know I can probably wait another week, but my long hair already gets everywhere (even my little dog sometimes poops it out!), so I know it will be a crazy mess when it does start going. So short hair for next week or so, and then onto my wig!

    BBwithBC45 - please hang in there, we are all with you there in spirit! I promise you will get through today.

    Shaz101 and Avmom - hope you were both able to sleep last night! I got about 7 hours in, surprisingly. Had the Neulasta bone shot this morning, so hopefully I'm done being poked until next week when I have to do my Nadir day (measuring white blood cell count).

    Take care all! Hugs!

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    I'm half way through Herceptin. Thankfully no allergic reactions. They're rare with Herceptin , but I have been allergic to almost everything recently, so I'm thankful this one goes ok.

    Real "fun" will start once we start putting the cold caps on.

    I'm reading that a lot of you ladies get Neulasta shots. This has not been mentioned to me. What does it depend on who gets them?

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Italychick- thanks for the heads up about short cutting vs. shaving. My hairdresser said she's (unfortunately) had lots of clients she's worked with and did mention something about close cut but not a Yul Brynner look (oops-dating myself!).

    I'm wishing you no pain from Neulasta but anxious to hear if you do have ny SE. My onc already prescribed the Claritin (which I realise is otc but I just went with him- think it cost a few $$ less)

    All the best,

    Katy

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    BB- glad things are going well so far. Worrying about reactions seem like it could almost cause one!

    You are doing great. Proud of you.

    I'm kind of new at this, so I'm not sure what the determining criteria are for giving it. It is used to boost white cell production and therefore ward off infection. I am 57, so perhaps because I am edging into an "older" category and they feel my general health would be served by this boost to white count?

    You could certainly ask one of the nurses there, or follow up with your mo after. They usually give it 24 hours after your treatment.

    Katy

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    BB- I just looked up who gets Neulasta. It is weighted towards older women. And patients with or at risk for kidney, liver, and other issues. Not every practitioner feels it is worth the side effects for every patient. It is extremely expensive, though the copy's may not be too bad- I read a $25 copay for ea $4,000 shot. Yikes., Here is a partial link to an article discussing. Medshadow first-person/does-every-cancer-patient-need-neulasta/ You might be able to find it. I don't think specific links are allowed.

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Wow...busy group so far this morning! I just got caught up and I'm so proud of you who have already 'sat in the chair' and gotten started!!! I'm going in about 2 hours to pre-register for the port placement and get my chemo orientation with the NP. Then, my journey begins on Thursday at 0700 with the port and then drive down the street to the infusion center to get my first treatment. Surprisingly, I don't feel all that anxious or scared but I'm more like 'lets get this done already!"

    I've come to terms with the hair loss and most of the side effects that I might be faced with. I'm dreading the steroids though...I had gastric bypass in 2007 and lost almost 100 pounds. I REALLY don't want any weight gain as I've managed to keep my weight in the ideal range since my bypass surgery. I might have to arm wrestle the MO about this but we'll see...

    I am supposed to get the Neulasta shot too and I'm only 43. I think it might have more to do with the specific chemo cocktail?

    Bekah

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    rleepac - I have lost 50 pounds over the past 4 years, and am also worried about weight gain. I laughed and told my doctor gee, I lost weight, but guess I flooded my system with toxins from my fat, so my reward was breast cancer. But I will take each day as it comes. My port hurt for the first day, but Advil took care of the pain. Then it went away and now it just feels like I have a nickel in my chest. They really have to jerk around muscles, etc. to get it in there correctly, so that's why the pain occurs. Ask if they have the spray stuff to put on there to numb the area before they stick the needle in the port - it helps.

    I only get the steroid the day before, day of, and for 2 days after chemo, so I'm hoping the steroids won't affect me too bad, but just don't know.

    My oncologist has done everything, every scan possible, so she is probably erring on the cautious side about giving me the Neulasta. I think it can be discontinued if my white blood cell count stays up, but since I have three grandchildren I am willing to put up with it for now. I get tested on Monday to see what my white blood cell count does.

    Today, so far, so good. Going to the bathroom fine (was worried about constipation). Took an anti-nausea pill today just in case. Stomach felt funny this morning, not nausea, but more like how it feels when a muscle is spasming kind of feeling. People told me stay ahead of nausea because once you get it, hard to control. Did a walk with our dog this morning, probably a second one this afternoon.

    Good luck to everybody today!


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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Katy: LOL at the dog pooping your hair out. I am finding humor anywhere I can take it now.

    And I LOVE Yul Brynner. Nothing hotter than YB in Ten Commandments. I don't even want my husband around when I am watching it. I don't want to have to pick my tongue up off the floor…..


    Wow, $4k??? Gawd. Somebody's making some big money off this whole cancer business.

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Thanks Italychick. I'm definitely going to express my concerns about weight gain. They will probably dismiss them and tell me I'm being silly but I'll make it known that it's important to me and hopefully they will be sensitive to it. Glad to hear the port is manageable. Hoping mine will go smoothly too.

    Trvler - the $4k is what they bill the insurance but I'm sure it's not the actual amount allowed under the insurance. It might be <$1k allowed but that is still A LOT of $$$ for sure! Cancer is big business but I can honestly say that I'm impressed with the advances that are being made. Just think, if I was diagnosed with HER2+ cancer 10+ years ago...my prognosis would be much worse!

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Yes, they have definitely come a long way. I just can't imagine how I would be coping with this nightmare without THIS site.

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    rleepac - the Herceptin and the Neulasta are both subsidized by the manufacturers. I have great insurance, but am still in my 20% copay portion for another few thousand dollars. Cancer is crazy expensive. Make sure the oncologist's office gets you into the Herceptin and Neulasta discounts. The Neulasta costs $25, and the Herceptin a few hundred (depending on income level, whether under $100k annually or not). So their assistance reduces my 20% copay for now.

    BBwithBC45 - how's it going?

    shaz101 - ok today after treatment? I think you should be up now, but maybe not. Still trying to figure out the time difference between San Diego and Australia, I think you may be close to getting up?

    Stay strong everyone!

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Italy:

    This site may help you:

    http://www.timeanddate.com/time/map/

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Fortunately (or unfortunately) I've already met my Maximum Out of Pocket expense so I shouldn't have to pay another dime for the rest of the calendar year. Well, that's something to be happy for right?!?

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Rleepac: It is s good and bad thing. I had a bad health year aside from the BC dx so I got my double free at the end of the year as a bonus. Looks like I'm headed that way this year too. But my mo office has been very proactive and suggested they try to get me some help as I am on disability. They were able to get me copay help until the catastrophic ins @ 100% kicks in. And the hospital had another plan that has helped with all they scans and the port. All in all I feel I've been very lucky to have gotten the care ive had all along. And that extends to nurses, techs, office workers, radiologists, PAs and more. Everyone very helpful, but I've come up a bit short in contributions to the stupid comments thread hah

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  • Msmath
    Msmath Member Posts: 77
    edited March 2015

    I'm really missing being at work. I teach middle school math and I miss the kids so much. I feel like should be getting ready to go back since I've been out a month with my BMX surgery. Instead I'm heading to by PS tomorrow to finally get rid of my drains and one last TE fill. Then off to the wig shop. My MO felt that I shouldn't continue working (too many germs). I start chemo Monday so I'm planning a surprise visit to school Thursday! So here is my question ... How many of you are still working

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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    I plan on working through chemo. We'll see how it goes. I work in an office at a desk so if worse comes to worst I may occasionally work from home.

    I start chemo on Thursday, just had my chemo teach today. Based on what the nurse said, it'll be about 2 1/2 hours total between blood work, waiting for blood results and getting my AC part of my ACT treatment. I thought it would be longer based on what I kept hearing! I decided to take this Thursday off since it's the first infusion, but I may just do a long lunch for the others.

    I've prepped my house, got my wig and hats, got the anti-nausea meds, sun-block, hand disinfectant and wipes. I just need to make sure I bring one to the office as well. I'm fortunate that I work with a very supportive manager and group of people.


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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    They told me 2 or 2 and 1/2 hours, and I was there from 10:30-5:00. But I had a reaction to the Taxotere so they had to do that part slower, and the Herceptin portion took an hour and a half. Pre-meds and blood work took an hour (there was a backup at the blood checking machine), the two chemo drugs totaled 2 and 1/2 hours, the Herceptin took an hour and a half,, and then a half an hour saline drip at the end.

    I'm still working, but I have a desk job and already work from home 2 or 3 days a week, and I have worked with my boss for 27 years, so he knows my work discipline. I am very lucky.

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    I plan on working through chemo and only taking time off for the actual infusion and if needed for side effects. I'm a PA so my MO was worried about me working. However, I work in an Occupational Health setting so I rarely see anyone who is actually sick. I do routine annual exams, sprains and strains and sewing up cuts. I assured my MO that I would use a mask if anyone comes in sick and he was ok with that.

    Will have to see how it goes though. I'm acting tough right now but I'm really kinda whimpy when it comes to getting sick so I might change my mind at the first bout of side effects 😜

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    I'm here. I had an appointment with the BS this morning as I have had to had my underarm drained every week since the AC but he was happy with it today. So I don't see him again for 6 months unless I have an issue.

    I feel like I have car sickness and I've had a migraine brewing all morning. I can't take my migraine meds for 5 days after treatment due to possible increased risk of side effects. Luckily I also have panadeine/codeine that may have done the trick. I also have the neulasta injection on day2. I asked the nurse to do it this morning.

    How is everyone? we all appear to be doing well. That'll give everyone some confidence.

    Msmath, I'm not working either. I have personal insurance and if I work I'll stuff up the waiting period. My boss is in contact with me and we're hoping I can work on some projects from home. I look after a small team and I'm responsible for over $400 million of assets. So I'm getting behind and no one else can step in. I hope chemo brain is not too bad. I miss work!

    Thinking of you all. It's very hard to read and write using my phone. Big hugs to you all xxx

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    I'm doing fine so far. Just did a 3.6 mile walk, feeling fine. I am taking all the meds just to be on the safe side. Planning to do a five mile hike tomorrow at work hopefully. My friend Cheryl and I do a long lunch, go into work early and leave late. If all goes well, 26 mile bike ride Saturday. Hoping that won't be too ambitious, so we will see.

    Glad everybody seems to be doing fine!

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Italychick your amazing. I did manage a 5km walk last night. But I haven't done anything today. I try for every 2nd day. I've also bought an indoor trainer for my bike. So I can do some if I don't want to go out.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    SC Coqui- I start Thursday too. Good luck. I'll be thinking of you. I was told to plan on being there 5-6 hours total each treatment. One hour more the first time since I have a sit-down with the onc nurse. I'm havingT-C only. Makes you wonder, the differences between our treatments. I guess as much as I want to know everything, in advance, some things I'll only know when I know

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  • avmom
    avmom Member Posts: 324
    edited March 2015

    I'm doing little bits of work from home, and occasionally popping in to the office. Our staff have grade school kids who circulate every virus, and my job involves regular contact with the general public, so my oncologist and GP think it's too germy to go regularly. I'm worked about the chemo fog too - I've been forgetful and have had to make lists with the fatigue after surgery. I think it's also the mental stress of dealing with changes in my diagnosis. Right after surgery, it looked to my surgeon that I likely had stage IV metastatic disease, and I was trying hard to prepare for that until the pathology report came back. The surgeon found an enormous bed of abnormal breast tissue (8x8x3.5 cm) that did not show on mammogram or ultrasound, and all 11 lymph nodes removed we're grossly enlarged. When the pathology came back, all of the abnormal tissue was DCIS, with no residual IDC despite the biopsy report saying that the margins were not clear. All lymph nodes were negative for malignancy, so stage IIa. Big changes in both prognosis and treatment, and it has been a bit of a whirlwind since then. I'm thankful for the new diagnosis, but I'm just emotionally spent.

    Did my neulasta shot today - so far, feeling a bit "burpy", with an acid stomach since chemo yesterday

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Wow, Avmom. That must have been a mental roller coaster.


    You ladies doing those 5k walks and bike rides are amazing.



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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    good morning everyone! I hope yesterdays's girls are feeling ok.

    BB? Shaz? Who else?

    And tomorrow Rleepac and Coqui? (and me)

    Anybody starting today?

    My good friend is coming up to Oregon from CA to go with me tomorrow. A last minute decision that I am very grateful for.

    Hope everyone is feeling well and have a peaceful day. I am managing, moderate butterflies in my tummy.


    Katy

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Hi, I'm doing OK, having trouble sleeping. I think its the dexamethasone. I have a little nausea, indigestion and headache. But all doable. The headache for me is the worst because of the possible lead into a migraine. I can't take my migraine pain meds for 5 days after chemo. Mentally I feel very positive!

    Avmom what a rollercoaster! I'm glad that your new diagnosis and can totally understand why you are spent. And by the way I've been having lots of little burps too. 

     Trvlr, I'm not being that good! I used to do a lot before diagnosis, but this knocked me on my arse. I think the knowing I will beat this has helped me to try to be more active. I have hip bursitis on both hips. The chemo seems to be picking on it! Ouch. Probably part of the sleeplessness to, as I have to move from side to side. 

    Here's to a great day. I hope those of us that have begun are continuing to to well and that those that are about to start can gain strength from that. 

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    Slept great last night. Kind of gassy, and definitely swollen. Some burping too, and food tastes like cardboard. Up 5 pounds from the steroids. But I can't wear some of my shoes, so I'm hopeful it is water weight and will start subsiding tomorrow since today is my last day of the steroids until next go round. Planning to do my 5 mile hike today!

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