Starting Chemo March 2015

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

    Katy: Wow, I am sorry you went through all of that. My mom is bipolar and I know about the steroid thing. I think she once took prednisone and had to be hospitalized or almost did. I hope you got some good rest last night.

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

    Wind: Thank you so much for posting that. It really helps me looking down the pike (whenever) at chemo.


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  • Meme117
    Meme117 Member Posts: 194
    edited March 2015

    Katy hugs 💓to you thanks for sharing. Were you the one who shared the seal photo? Have never been to Oregon So don't know the beauty there. So sorry about your brother. My husband is bi-polar, that was a huge challenging few years for us with the dx and medication trial & error. Now my niece is struggling thru her dx. Try to have good day today I hope rainbows shine over you today

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    ItalyChick - you are my idol LoL! All I can say is go girl!!! I like Nickel as a port name except mine feels more like a small yo-yo. I'm very thin so it looks like an alien. I think we've decided on 'Alf' (Alien Life Form). That was my DD's idea because she likes the old show 'Alf' and she said it makes me look a little alien-like. But she said "that's ok though mom...you're beautiful so you can pull it off". God I love her LoL!!! So wise for 13-yr-old ;)

    Jackbirdie. I love the pic! Given all your posts (not that I mind hearing from you AT ALL) I'm a little concerned about the bipolar rearing it's ugly head. Please follow up with your primary care doc and don't let that get out of control!

    BB - I like Snoopy for a port name...very cute :)

    Shaz - Thrush is no fun. I have used Rx Nystatin (swish and spit) in the past and it clears it right up. Hope that helps

    DianeDavis - I had my port placed the morning of my first chemo treatment. Unless I did it a full 2 weeks before and allowed complete healing, it was probably the best way to go. The hospital left the test needle in and they used that for my first infusion - worked just fine. I'm now day 7 and my port is barely noticable as far as how it feels inside me. It it quite noticable if you look at my chest, but it doesn't hurt.

    Windgirl - thanks for checking in and offering tips and support! It's so nice to hear from others that have been through what we are just beginning!!

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    So I was up at 0200 because I couldn't sleep. What did I do? Pester hubby hahahahahaha....he doesn't sleep well anyway so we just spent a few hours talking and laughing. We might or might not have done a little mattress dancing :o)

    I decided to go into work at 0600 instead of 0700 because I just feel so restless.

    Now I feel like I'm going to crash...

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

    Haha. I would have to be literally dying before I would ever wake up my husband. He only sleeps like 5 hours a night and I am so protective of that sleep because I know it's not enough. He goes to bed after me (most nights :) and gets up before me almost always.

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    He's self-employed and homeschools our daughter. AND he keeps really weird sleeps hours anyway so I figured he could go back to bed after I left for work!

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    My scalp is starting to feel tingly and a little sensitive. I'm 7 days out from 1st AC treatment. I think I'm going to preemptively buzz it this weekend. The sensitivity is not unbearable but it's a little uncomfortable. Anyone else who hasn't buzzed theirs yet starting to experience scalp changes? What day did you notice?

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

    Shaz and Meme and Rleepac- thanks (and everyone else who probably has no idea what to say after my unseemly outburst last night) I was the one who posted the Elephant Seal. Haha. Just how I feel sometimes lately. It is a dream come true to live in such a naturally beautiful and lightly populated place. Trees by the wild coast. Weather that rarely strays 10 degrees from 62 F. Great for birding and gardening.

    I am in quite close contact with my shrink, who is wonderful to me (he texted me a sensitive poem while I was in surgery post mx). I had to leave him in LA, but he agreed to continue with me on Skype (they need to SEE YOUR FACE) hearing you on the phone not enough. He allows me his cell phone number (which I use but never abuse) and we "meet" every 3-4 weeks, and every great while in person. He is a specialist in bp and ptsd and knows me very well now after 5+ of our working relationship. In fact, I "see" him today.

    I woke up at 3 again, but for the first time I did get back to sleep. I have mouth sores and general flu type malaise today,but otherwise ok. Please don't worry about me. I am doing very well. Just a bit of a stumble last night and you all were there to pick me up. Even though I am alone here, I don't feel lonely.ever. It is my choice to be here and if ever there is a time where it needs be, there are places I can be more connected

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

    Mouth sores- lysine. I am going to be the person who drives everyone crazy with that one forever. :)

    I am glad you got back to sleep last night, Katy. Sounds like you are lucky to have a great doctor!

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

    I am taking the Lysine. And oasis ( like biotin) and swishing the soda. I have a blood draw this morning so will ask what else. It's really not that bad.

    And Trvler- sorry about your moms BP Thanks for reaching out

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  • molly1976
    molly1976 Member Posts: 403
    edited March 2015

    Hi everyone, I am new - just started weekly taxol and herceptin yesterday. I was very surprised that I slept like a baby last night after reading that a lot of people have insomnia problems with the steroids. The worst parts of the whole thing to me were the loopiness from benadryl and the cold saline to flush my veins at the very end! My MO is extremely laid back and acts like everything is going to go just terrific for me so it's nice to be able to read some more realistic ideas of what the side effects will be! I've gotten a lot of suggestions here already just browsing threads.

    My main problem right now is constant worrying that my cancer is actually not 1a but has secretly spread throughout my whole body. I'm assuming I'll get over it eventually, though. Xanax helps. Ha.

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  • wpmoon
    wpmoon Member Posts: 270
    edited March 2015

    BB - my chest is now breaking out with the rash/acne, in addition to my arms and back. My MO prescribed me doxycycline, which has helped with the swelling, but it's still there. It might take a few days to kick in. He also gave me a gel to put over the affected area - clindamycin, I think. It's hard to tell if it's from the chemo infusion or the hormone injection I had the week before to suppress my ovaries during chemo (Lupron - I did it just because of my age, 27, I was worried about irreversible menopause). It still doesn't look great, and I was embarrassed to go to work last night, but luckily I work with a bunch of women that didn't ask or mention it.

    I'm going to need to try the Lysine. I've got quite a few sores in my mouth. And coffee doesn't taste good anymore :(

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    molly - I didn't have problems with insomnia until day 3 or 4. Prior to that all I did was sleep! Even though the steroids SHOULD have worn off already if you go by the drug half-life...It seems the effects of them tend to stick around a little longer.

    I'm driving everyone at work crazy because I keep 'tasking' them with things and I won't get our of their way to do their jobs LoL. Good thing I have a great relationship with my employees. They finally said "ok Bekah...why don't you go sit down for a while to um...rest. Oh yeah...and to LEAVE US ALONE!" HAHAHAHAHAHAHA

    Fine...I can take a not-so-subtle hint!

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

    Hi molly 1976. I haven't had any sleeping issues at all, so maybe you are one of the lucky ones that won't!

    wpmoon, they can't figure out what is causing the outbreak? My doctor said rashes, etc. are common and expected, but it sounds like you are getting the worst of the deal. I'm so sorry.

    Jackbirdie, let us know how your blood draw goes - sending positive thoughts your way.

    rleepac, my head started tingling this morning after I read your post, but I'm not sure if it is really tingling, or I was having sympathetic tingling lol. I am 8 days from chemo. Going to see my wig lady tomorrow and get her opinion.

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  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    im still at work but couldn't help checking in on everyone! IC-thanks for the reassurance about my port day before tx. I'm putting Biotens mouthspray on my shopping list. It is kind of like nesting, someone else mentioned that..but no baby! I can't say how impressed I am with your 26 m ride! You sound like how my daughter would deal with BC. Check her out at Live Outside And Play. I'm glad your bro is coming. Nothing like a little unexpected support.

    Katy-you write so beautifully and from the heart. I am so proud of you for trusting us with your story. And we all have a story. I'll share mine someday! I hope you turn the corner soon in your healing. I can't imagine having a MX and chemo etc! I had the unimx in 2011 even though some cells escaped and attacked! Sending you warmest wishes and greatest admiration.

    Windgirl- thanks for the tips. Can I ask what you mean by full face wig? I found a BC Center near where I live and they will cut my hair for free on Sat! Donating it to Locks for Love.

    Molly- welcome to the best group of ladies on this site (for me) and I worry about the same thing

    Rleepac thks for the port reassurance and it made me smile to hear about you talking and laughing with your hubby. Its been so long since we did that...but good memories

    I better finish my work. Leaving early for dinL oncologist appt. If anyone who wants to contribute to my shopping list, send me your most recommended item/items for a chemo trip. I'm thinking of buying doubles and put together a basket for my friend with uterine cancer. She's slated for chemo and radiation soon.

    Have a vdsar day all!

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Wpmoon, you have it so much worse than I do. I really hope that the meds they gave you kick in quickly and bring you relief soon.

    Mine is still just on my face and after last night it doesn't seem to have spread. It might be drying out slowly, so maybe I won't call the MO just yet and wait it out. I will mention it however at my next chemo. As a teenager I've never had such a terrible acne.

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

    I think it's 'lace' wig not face. I looked them up. It has something to do with fringy hairs around your face to look more realistic?

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    molly - one more thing...did they do any scans? My MO said scans were routine at his facility. I don't know if my staging had anything to do with the 'routine' statement or not. I have heard other people say that their MO won't order scans unless you have symptoms. But it would be worth asking to put your mind at ease? I had a PET/CT scan done as a baseline and it was VERY reassuring to know it wasn't spread everywhere in my body (like my mind thought it was)!

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

    Biotene mouth spray - I found it at Wal Mart. I got the mouth rinse and toothpaste too.

    Chapstick

    baking soda and salt water rinse

    epsom salt baths

    yogurt

    gentle toothpaste

    gentle body soap - Dove Sensitive maybe? I thought this was overkill, but first few days after chemo when I took a shower, the bath wash stung.

    Foot basin to soak your feet. Not sure if it helps, but it feels good. I just got a plastic dish tub at Wal Mart for $5

    Saline nose spray - Gentle noses, like the atomized mist for little kids

    Aveeno Stress Relief lavender lotion.

    soft toothbrush



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

    welcome Molly! This group is the best! Like you, rleepac and others, every ache and pain I have had the potential to worry me about itc escapees and mets. My mo did also run baseline PET/CTS and it helped enormously to allay my fears. Still no guarantees of course. He did say from here on out additional scans would be ordered only based on clinical symptoms and weird blood work.

    Speaking of blood- the draw went fine, port is less sensitive, and wbc and especially baby whites (neutrophils) are at expected basement levels. She said without having had Neulasta I probably wouldn't have any at all! Yikes! She said they might continue to go down this week but should be on their way back up by chemo 2, Mar 26. So now I lay low, walk, eat, hydrate, in general treat my body well. She looked in my mouth and said continure the Lysine and baking soda swish. Didn't look that bad to her. Sore, little blistery, but not the white "thrush".

    DianneDavis- thank you.

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

    great suggestions Italychick! Oh how I wish I had a bathtub

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

    I keep tears eye drops handy. Every night I wake up and my eyes are dried shut. It's not a deal breaker but very soothing and it was nice I had it on hand and didn't have to run out and get it.

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  • molly1976
    molly1976 Member Posts: 403
    edited March 2015

    My MO did say he could order a scan but I feel like I'm being a bit silly given the small size of my tumor and that it had not spread to the lymph nodes! I will ask about it next time I see him if I'm still this anxious.

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

    I think having a scan for such a small tumor is not a good idea. Remember, those tests are radiation as well.

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    hi molly, sorry to see you here. Every time I feel a new ache I think it's another cancer. I've heard that it is common to feel that way. Right now... I think it's in my brain, every day I've been getting this weird pulsing pain near my ear. it last for a few minutes and then stops for a while. I think the thing is to have enough tests to use to fight the thoughts in your head but not so many that you're causing more issues. For example when I start thinking I have brain cancer, I think to myself... "Sharon you have had a bone Scan so the chances are its not another cancer, plus I'm having chemo, so that should kill any rogue cancer cells". But it's your body, do what you need to do to get through this with your sanity intact.

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    I had some retail therapy last night 😊I'm not much of a shopper normally. But I managed to buy... 1 pants, 9 tops and 2 scarves

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  • molly1976
    molly1976 Member Posts: 403
    edited March 2015

    Haha! I bought a dress from Zappos on my phone while I was getting chemo yesterday. I thought, "if anyone deserves a new dress right now, it's me."

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

    Impressive haul, Shaz!

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    That's exactly the same thought I had...

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