April 2015 Chemo Crew... Starting in April? Please join us!

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited March 2016

    My worst side effect would be a tie between my 4 day hospitalization for febrile neutropenia and feeling like a grenade went off in my mouth for the last 3 months of treatment. In retrospect, the hosp. really freaked me out. I was afraid it would happen with every treatment even though everyone told me it most likely wouldn't...I am quick to tell others not to panic if that happens. About my mouth issues, my suggestion would be to never stop complaining to MO team. There are always more tricks in the bag to try....don't just try one and wait until the next treatment to tell them if it didn't help. Sometimes what works for everyone else, doesn't work for you and they have to dig deeper into the bag if tricks.

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  • Rpayton
    Rpayton Member Posts: 235
    edited March 2016

    I would have to say my worst sides were the chemo brain/fog; I dont feel as sharp mulittasking like I used too. The horrible heartburn for days after treatment that kept me up all night despite prilosec twice a day. And not being able to taste and enjoy food for 6 months yet still gained weight from those darn steroids.

    The sides I still have: brain memory issues, not being able to retain as well, lasting neuropathy in my right foot, ugly weak discolored toe nails, slow growing hair.

    Tips would be to stay active: walking, elliptical, yoga and meditation made a huge difference for me. Eat clean and hydrate, hydrate. Reach out to a group like this and connect so you don't go it alone. You are each amazing to me and always will be!

    Thanks for adding these, Lynne, to our group spreadsheet.

    HAPPY SPRING, NEW BEGINNINGS!!!

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  • AndreaC
    AndreaC Member Posts: 220
    edited March 2016

    I agree about the mouth sores. That and the brain fog were the worst SE's, if you don't count the hair loss (which I found quite traumatic). For the mouth sores my MO prescribed miracle mouthwash and it helped a lot. I also ate Popsicles...

    As for the brain fog, it felt like I had a really bad head cold without the congestion. I found it hard to concentrate so for about a week after each chemo cycle I did not drive, just to be safe.

    My advice to anyone going through chemo right now is to be kind to yourself. Ask for help. Sleep when you need to, and you will...especially on days 2 and 3 after chemo. Hydrate!!! Eat small, well balanced meals. And remember, you are amazing and you can do this!

    Andrea


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  • Stephmoen
    Stephmoen Member Posts: 563
    edited March 2016

    my worst side effect was not being able to eat or drink since it all tasted like cardboard I lived off Ramein noodles and hot tea! Can you believe it's been a year and we were in their shoes? I love this site helped me soooo much and of course you wonderful ladies :)

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  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    Ja, exercise, protein, water! And repeat.

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  • Rpayton
    Rpayton Member Posts: 235
    edited March 2016

    Happy Easter Chemosabes!🐇

    What a difference from a year ago and where we are now. Blessings to you all.

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  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    Happy Easter, Renee and all.

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  • ksusan
    ksusan Member Posts: 4,505
    edited April 2016

    Today is my chemoversary!

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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2016

    Hooray for being on this side of it! Mine was 3/31. I was originally scheduled to begin 4/1, but they moved it at the last minute. I was at a swim meet all weekend and remember thinking that last year at the swim meet I was contemplating my port surgery and chemo which were all set to begin the next day. What a blur this year has been!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2016

    WERE ALIVE!!!!!!!!!!!!!!!!!!!!!!!!!!! I just got a copy of my records...scary stuff. One thing that made me laugh though was the statement that "patient is anxious to begin surgery" that's a nice way of saying g I looked my surgeon dead in the eye and said if you don't cut, I will. I have razor blades and whiskey. We have a beautiful relationship ever since lol. Waiting for my check up...getting nervous and babbling. Luckily kept pretty busy today. Dear god, please just let me die clean and quick. My friends mom who was diagnosed as stage 4 is now declining in the hospital. Her heartbis broken. I sent birthday cupcakes up to her room since yesterday was her birthday. I feel so bad and wish I could do more than just lending an ear and making dinners occasionally. T- 2 minute until I find out if I'm headed down the same road. Sigh. Sorry for the nervous rampling...

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  • ksusan
    ksusan Member Posts: 4,505
    edited April 2016

    You remind me of a trans client I had back when they were required to have therapy (not just evaluation). She said, "I could just take care of this. I know how to castrate a sheep." I said that while I was sure she could do it, doing it yourself was the sort of thing that would stop most docs from being willing to take care of the rest of the business.

    Let us know how it goes. Do take in that you keep getting reassuring news.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2016

    Lol ksusan, I think your client and I might have been friends. Alls well and ops normal, and I got my new memorial tattoo!

    image

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  • ksusan
    ksusan Member Posts: 4,505
    edited April 2016

    Nice ink, Jen.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited April 2016

    1 year anniversary of my biopsy today. I celebrated by beating the crap out of some chicken breasts to make cutlets. Thinest cutlets ever!

    Saw a rheum. a couple weeks ago. After a 10 minute exam she was ready to DX me with Rheumatoid Arthritis because the pain is worse in the AM and there is signs of osteopenia in my finger joints. Never mind that my blood work was negative...she says its something called seronegative RA...if it walks like a duck and quacks like a duck then its a duck - even if it doesn't have the dna of a duck. She wasn't at all intesrested in my cancer journey, treatments, side effects, etc. She sent me for more bloodwork, but already started talking about putting me on plaquinil or methotrexate. Needless to say, I have an appointment in a couple weeks with a different Rheum. and won't do anything until following up with MO. My hands are no longer balled up into fists in the morning because I've been sleeping in wrist splints, but they are still stiff and sore. I'm not nearly as sore everywhere else...no more frankenstein shuffle to the bathroom in the morning. I think that jumping onto some expensive, side-effect prone medications without knowing for sure that I have RA would be a big mistake.

    Speaking of MO...I fly to Illinois (this time all by my lonesome) again in a couple of weeks. I have an appt for accupuncture, a colonoscopy, f/u with P.S., and check up with M/O. Not exactly a spa weekend.😐

    Got my first haircut to take care of a developing mullet situation. I was very excited beforehand, but after I was dissapointed. I think I was expecting a miracle.imageHope all is well with everyone else!

    Renee...it's like a 100 degrees here today. I will gladly bring some heat with me and leave it behind when I come to Illinois. I can't handle 100 degrees and night sweats anymore!

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited April 2016

    Nice pic Jen! I agree a second opinion is warranted. My joint pain and shuffle are much reduced since I stopped Zoladex in February, but that could just be a coincidence.

    I need a pep talk. It's 4 weeks since my stage 2 reconstruction and oophorectomy. My sutures opened up under the breast and I have a giant Grand Canyon sized crater under the breast. (Okay, maybe only 2 inches long and about 3-4 centimeters deep). I've been packing it with gauze 3 times a day and my PS thinks it will resolve, but my patience with post surgical complications is kind of at its end. And then today I went to see my endocrinologist for my regular 6 month check up for Hashimotos and she pulls up my baseline DEXA scan results from 2/27/16 that my MO had ordered. Since these were done the week before my surgery, I really sort of forgot about it and figured I would have heard from my MO if something was wrong. Well, apparently my T-score for my lumbar spine is -2.7 which means osteoporosis. She was shocked my MO had not called me. She suspects the 15 months of Zoladex caused the bone loss. I'm 49 and no family history of osteoporosis. Has anyone else been diagnosed with osteoporosis after BC treatment? Is anyone on bisphosphonates or Prolia. I'm not sure how much more breast cancer can take from me

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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2016

    Dizz, I think you look just beautiful! I did not know you beforehand, and it's hard when we look in the mirror and don't see ourselves, but you look absolutely stunning.


    Scarlett, I would be really mad that MO did not call you about the Dexa scan. Mine called 4 months ago just to tell me mine were normal! Even though mine were normal, MO wants to put me on Prolia because I'll be on AIs for 10 years, and because my cancer has not behaved and Prolia has been shown to significantly reduce the risk of bone metastasis. He gave me the long list of pros and cons and told me to do some research (I already had and was planning to bring it up, but he beat me to the punch). He was not sure if insurance would approve it. We just heard yesterday that they did approve it, so I'll probably schedule it for the 18th, because I need to be there anyway. I know the long term is unknown, but at this point, if I can live long enough to see my kids graduate, anything else is icing on the cake and I'll take whatever collateral damage occurs.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited April 2016

    Kbee, what are the biggest a cons for you of Prolia besides jaw necrosis (which is a big one!)

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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2016

    The unknown long term effects. If we wait to see the long term effects of all drugs, they'll be outdated with newer and better things available anyway. That and the jaw were the big ones. There's also increased risk of infection. I see that people that do have problems with bone pain, etc....it lasts the whole 6 months. It seems those effects are rare though (although to those it happens to, it must totally suck). I know a few peolpe who've had the injections and all have done fine.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited April 2016

    Kbeee, Thank you for the kind words. I think my disappointment mainly stems from it being yet another sign of how much life has changed. I keep thinking that once I can 'look the part again' maybe my life will resume its path. I know that's a bunch of b.s., but those thought persist. Talk of the DEXA scan remind me...this 1st Rheum that we saw brought up the DEXA, but said I was too young to need one. HELLO...did you not hear what I said about 8 rounds of chemo??? More blood work camd back (looked it up online) and its all negative and in normal range. Even all the inflammation markers are well within normal range.

    Scarlett, sorry about the healing troubles. Is the packing working? H.

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  • Rpayton
    Rpayton Member Posts: 235
    edited April 2016

    Dizz all I see are huge gorgeous eyes! You are beautiful! Please bring heat! We are freezing in the low 30s with some rain snow showers here in Northern IL. Yucky. Would love to drive in to meet you sometime when you come in to IL! I'm about 2hrs West, lots of road construction on 90, which stinks, but the weather now getting nicer.

    Survived my last Herceptin. So glad to be out of the chair and over this big bump onto healing. So many changes personally and in my professional life this year. Definitely a plan by a higher power and I guess I found the path to get back to living. Just keep looking and moving forward...

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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2016

    Renee, How close are you to the Quad Cities? I sometimes venture there for kids' events.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited April 2016

    Will do my best Renee. We've got a little reprieve from the heat today in the form of clouds and some spotty sprinkles. If we are lucky, we'll get some actual measurable rain over then next 4 days. We haven't had a drop almost 70 days. I would love to meet you sometime too...We are thinking about a longer, more recreational trip to Illinois this summer when I come in for another follow-up. We'd probably rent a car for that trip and could drive West to meet up with you. I'll make sure to let you know if we get out act together to plan it. Congratulations on being done with the Herceptin! I hope you are still happy with your new, more patient focused role at work.

    P.S. Thank you for the nice comment about my eyes. They are large and round and always have been. Kids can be cruel and used to say I had bug eyes. As an adult, it didn't help that doctors think my thyroid needs checked when they meet me for the first time. Being a little heavy handed with the eyeliner helps them not look quite so large.




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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited April 2016

    Forgot to mention they needed to adjust my schedule to accommodate a change in the days my MO works. The changes resulted in a couple of holes in my schedule. So, on top of my colonoscopy and my acupuncture, I was able to add a mani/pedi and a massage in the hospital salon. Much closer to a spa week....with just a few Dr. appts. thrown in.

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited April 2016

    Dizz, you do look beautiful. Wow!!!!


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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited April 2016

    You all are too nice. Many thanks for all the complememts. I'll do my best to accept the graciously and believe them. How's everyone elses hair doing these days? Anyone venturing beyond the pixie rhelm yet? It's frustrating how slow hair actually grows. At this rate, I might have mini-bob by next fall....if I'm lucky.

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  • AndreaC
    AndreaC Member Posts: 220
    edited April 2016

    Dizz, I think you look fantastic too! I am loving how all of us look with hair.

    I have been working out at the gym and swimming, and have lost about 9 lbs. in the past month! I am so happy. I have also joined the Dragon Divas, a dragon boat team for breast cancer survivors and supporters. My first practice was Thursday and it is going to be a good workout! I have a lot to learn. But everyone was very welcoming.

    Friday is my PS consult to discuss reconstruction...I am looking forward to it! Then the next day DH and I are off to Portugal

    Hope you are all having a great weekend!

    Andrea


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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2016

    Andrea, Thatvtesm sounds fabulous! You have an exciting week ahead.

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  • ksusan
    ksusan Member Posts: 4,505
    edited April 2016

    Okay, I'm going to try a set of Juzo sleeves. The Mediven feel like being wrapped in ace bandages after awhile.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2016

    Ksusan, I use juzo sleeves. I like them for what they are.

    Look I got hair!

    image

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  • ksusan
    ksusan Member Posts: 4,505
    edited April 2016

    I kinda miss the blue, but you look great. Slothabouttown also uses Juzo if I remember right.

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