Starting Chemo March 2015

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    My ND says to just start backing off on magnesium until you don't have a bathroom issue in order to get to a good dose for you.

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

    Leigh, what form? Some forms are more poop producing than others.

    I've never talked about poop so much in my life haha

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  • eheinrich
    eheinrich Member Posts: 792
    edited November 2015

    I wonder if we did a search of our thread how many entries mention poop?

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

    http://youtu.be/4Hr0KLnZ4n8

    Some fun at the beach today and a 2 mile walk. Felt good.

    image

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    That's great, Katy!

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  • Carrie37
    Carrie37 Member Posts: 331
    edited November 2015

    sorry about the surgery Katy. I hope the beach trip helped. Good for you for getting out of the house. Some days I just want to hide forever. Little steps. I hate that I am feeling better but still see cancer when I look in the mirror. I start rads next week and really not looking forward to it. Does anyone? I have never wished so much time away in my life. But I take advantage of the good days and do what I want! I say no sometimes.

    Re: loss of sensation after MX...yep, I guess I didn't think about the loss of sensation related to my sex life before I had the surgery. I was kind of worried about the cancer and surviving and not so much thinking of my future sex life. It has been sad for me to realize that part. Lots of tears. cancer changes us for sure in many ways. And forever. But we are all survivors!!

    Thanks for all the laughs with the auto corrects!!

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  • DavisD
    DavisD Member Posts: 338
    edited November 2015

    I had the loss of feeling after mx in 2011. Now I wish for that back...I have the prickly burning sensation on and below and doctors have minimized and implied they've never heard of it before. That hurts.

    The loss of sensation along with increasing dryness and marital instability all contributed to the end of my libido and sex life since we stayed married. It's not all bad, we are pretty good partners in many ways but no desire whatsoever. That was never the norm for me so maybe it will come back.

    Eileen and Arlene-You're not alone :)

    Katy-check email :)

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  • jumbledbamboo
    jumbledbamboo Member Posts: 158
    edited November 2015

    Hey all! Quick check in here. I will add that I had loss of sensation after MX. I doubt I will regain it. I went and got my eye drops today. Thanks for all the well wishes.


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  • jumbledbamboo
    jumbledbamboo Member Posts: 158
    edited November 2015

    Reading back through. I wish I had joined sooner. Ths bond between you all is so beautiful and the encouragement is so nice to even be a part of.

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  • slothabouttown
    slothabouttown Member Posts: 449
    edited November 2015

    Made it to Pittsburgh with no ill effects! I think my arms might have tried to blow up on the plane because when I took off my sleeves at the end of the night the latex "dots" on the band at the top had left a bright red pattern on my upper arms. I wear my sleeve most every day and I've never seen that before so I'm taking it to mean things were getting puffy. I don't think I ever stopped moving my legs on the flight, I'm sure I was a source of irritation to my neighbors! I've been here since Wednesday, getting my 10,000 steps in and eating healthy since these animal law conferences are always vegan.

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    Sloth, those dots are pretty typical from what I read on the LE threads. Worth paying attention to, but might just demonstrate that the pressure indeed changes at 35000 feet. Glad you made it!

    Jumbled, you're one of us!

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

    Yes Jumbled. I second what Ksusan said, you are one of us!

    Grandkids kicked my butt today, was feeling fatigued and first thought went to is cancer somewhere else making me tired? But hubby said he is tired too and took a nap, so I need to just calm the hell down

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    Yes, cancer sucks, but doesn't deserve all the blame for us feeling bad :)

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

    Amber- I also wanted to say you are one of us!

    Sloth- so glad you made it safe and are able to continue with your physical activity. Have agreat time!

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

    Amber: I am glad you found us and hopefully we can give you some support when you need it.

    I tell people ALL the time to join a chemo group, both on and offline. I think they think I am a little nuts but I don't care. If it helps even one person as much as it did me, it is worth it.

    Can you regulars imagine having gone through this without this group? I can't.

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited November 2015

    I can't imagine it either. The info and support that I've had from all of you has been invaluable. I come here to ask questions before I even go to my doctors, because the info and care here is better!

    I'm tired of telling people I had breast cancer when they ask. I think I'm going to tell them I'm a recovering chemotherapy addict from now on

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited November 2015

    Wait a minute...I just said "had" breast cancer! It's little things like this that make me so happy. My subconscious is starting to accept that life is going on. :)


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

    Haha- Ditto, Allison and Lee. Never would have made it. And congrats, Lee, for even the inadvertent use of "had"!!!!

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

    Someone I hadn't seen in a long time at Jazzercise yesterday asked me if I had cancer. I said I hope not. But I saw another person and I said I have cancer, too, because I wanted him to know I understood what he went through because his wife just passed. Sooo……

    But for me, I will be a LOT better after this rads itching is gone.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited November 2015

    Lee - "recovering chemo addict" - priceless.

    I was reading on twitter this morning that a Chicago Bears football player was talking about "one dimensional TEs", and for a few seconds I was trying to figure out why a football player would be talking about Tissue Expanders. And then I realized - he meant Tight Ends, a position in football.

    On a more upsetting note - I also read about an Indiana woman who told her family (including her four kids) and her friends that she had terminal cancer and she was asking for financial donations. Eventually it came out that she simply lied, she never had cancer. In my opinion this is just despicable.

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    People. They bug me.

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  • eheinrich
    eheinrich Member Posts: 792
    edited November 2015

    Lee you made me snort my coffee! Chemo addict......hahahahahaha

    I NEVER would've made it through this without you ladies. I tried to explain that to Alan - how this is so much better for me than going once a week to a support group. We are always here for each other - not just on Saturday at 11. I wouldn't tell the "shit my pants on a 5h flight" story to a bunch of people I don't know. But we know each other.

    Welcome to the family Jumbled.


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  • avmom
    avmom Member Posts: 324
    edited November 2015

    good morning, all.


    So I went to see my surgeon yesterday afternoon, to get the rest of my staples and stitches out, and my histology lab report was there. The 6.3cm DCIS in my "prophylactic" mastectomy turns out to be both ER and PR positive - ER strongly so. Very different from my triple negative IDC and DCIS on the right side. Crazy, but true. Now, I have been advised that I need to see an oncologist again. I expect that is to discuss whether endocrine therapy (tamoxifen, or an aromatase inhibitor) will be added to my treatment plan. Given that these are to reduce recurrence, I'm not sure how much the risk would be reduced in a person with a BMX, but we shall see.


    Just to confirm that there is lots of room in the universe for unrelated helpings of the shit sandwich, I fuelled my car just after my medical appointment, and the gas station attendant filled my diesel car's fuel tank with regular gasoline. I made it 600 meters before the engine died, and spent the next couple of hours arranging for my dealership to make room in their service schedule, getting my car towed (nearly 200 kilometres -about 2 hours on the highway) to the dealerships, and finding a rental car in a small community of only 7,500 at 5:30 p.m. so I could get the 85 kilometres (about 50 miles) home. On the positive side, a local car dealership rented me a car, and the gas coop that put in the wrong fuel is taking steps to take care of the cost. The manager even came to me at my car last night, and was prepared to drive me home, if necessary. Still, not what I needed to deal with yesterday.

    I wholeheartedly agree, as a fellow recovering chemo addict, that this group has been valuable beyond measure in getting me through this whole ordeal. Here's hoping today brings better news.

    Gentle hugs to all.
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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited November 2015

    Avmom- I just can't believe it. The sandwich is piled high. To have to deal with stupid and avoidable mistakes other people made after trying to process all of the new info from your path report, (which I'm sure is very rare, making you feel very "specially" singled out), is beyond the pale. All I can say is you are mighty strong, for one thing, and I repeat how glad I am you made the very tough decision to do the prophy, while it was still in situ. Hoping you can now continue on your path of healing. I'm sorry about your return ticket to oncology, but I feel like you dodged a bullet. Hugs.


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

    Ugh, Avmom. Like you needed that with your car on top of everything. I am sorry.

    I had a BMX and I will be taking Tamoxifen.

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  • avmom
    avmom Member Posts: 324
    edited November 2015

    Thanks, Allison and Katy.


    I've talked to the car dealership, and they are starting the process to fix my car. I'm not completely certain, but I think it involves a very extensive flush of the engine, and replacement of seals, etc. My service rep has reassured me that they are very familiar with the fix for this, and it is more common than I might think. Apparently, owners do it to their own vehicles. I have a hard time imagining that, if only because diesel is less expensive than gasoline, the pump handles are a different colour, and The fuel cap clearly states "DIESEL FUEL ONLY" in yellow caps. Oh, well. At least I'm not stranded.

    Katy, I'm not sure about the incidence of two such different diagnoses, but I think it is pretty rare, making me "special", but not in such a good way. Allison, I know that Tamoxifen is pretty standard for hormone positive IDC, but I'm less sure about how common it is to add Tamoxifen to treatment for DCIS. I'll probably see the oncologist early next week, which will put me out of my suspense. It's strange, really. I Seem to have gone from anxiety about there being no ongoing treatment to prevent recurrenc for TNBC though I am taking Metformin, to anxiety that I might have to take Tamoxifen for a long time. Plus ca change, plus c'est la meme chose.... (The more things change, the more they stay the same)
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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited November 2015

    Avmom- I have to tell you I actually did do that to myself once. Put regular gas into my diesel vw Jetta. I got talked into it (buying a diesel car) by a salesman, (at least 30 yrs ago) and they had all the special caps and stickers with warnings. I was distracted and pumped the gas myself. It was VERY expensive to fix. My recollection is that 30 years ago it was in excess of $1,000. I can't imagine what it would be today. I was very stupid, but I laugh about it now.

    In your case I am sure it's not funny at all. It was done TO YOU. And I was being sarcastic about you being special. I guess it didn't come out right, but I know it's not in a good way. I'm very sorry for all the pain and frustration and lack of answers you are going through right now. Hope you'll forgive me stumbling around trying to say something helpful.


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  • pboi
    pboi Member Posts: 663
    edited November 2015

    I too can't imagine going through this without all of you.

    Allison...are you still itching? No creams helping?

    Avmom...so sorry you have to deal with the car too! Yes, even with BMX, if you are er+ I think you'll likely have to take hormonals. Though it was DCIS so maybe not?

    I sort of feel like I've been nesting the past few days, getting myself and the kids stuff organized before my surgery next week. My nerves are a mess and I'm trying to keep distracted. I had my first uni mx, two weeks after my diagnosis. It was the day after Christmas last year and my brain was in a fog and it came up so fast I didn't have much time to think about it. I had a pretty easy recovery then.

    Now with this prophy mx and oophorectomy, I feel almost like I'm armed with too much information, have seen all that could go right or wrong with this, and it's making me more nervous. So looking forward to getting this surgery behind me.

    PB

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  • avmom
    avmom Member Posts: 324
    edited November 2015

    Oh, Katy, I understood that you were being sarcastic. My sense of humour, when it's working, is very heavily weighted to the mordant, dry wit style.

    PB, I'll be thinking of you during your mx. The one thing I can say about having an mx after chemotherapy is that it didn't seem like such a big deal. I was talking to my surgeon yesterday, and he suggested that, given a choice between doing chemotherapy again, or having surgery three more times, he thought I'dchoose the surgery. I replied that, if that was the choice, I'd buy the knives for him as a gift. Chemo was much worse, at least for me, even with a post surgery infection. My range of motion is already nearly as good as it was pre-surgery, and it's been days since I took pain meds.

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

    PB: I get how you feel. I was reading about all the stuff that could go wrong, too. But it all turned out ok and you will, too. The one thing that always helped me was when someone reminded me that the people who had easy times don't post as much about it. I honestly feel guilty sometimes when something is easier than I thought. I don't want to rub it in anyone's face who is having a hard time. I nested a lot, too.

    The itching comes and goes. It isn't constant. Just have to get through today's treatment and then I get 2 days off. The hardest part is after my shower when I can't put anything on it until after the treatment. It think the Calendula cream is the best. I might try the aloe leaf tonight, too.

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