Starting Chemo March 2015

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

    WPMoon, glad your second went ok and you are making it all right. Missed seeing you here. Hope the hair thing turns out all right. Such a worry

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    New side effect? - this morning I had an abnormal vaginal bleeding, including clots. As if my period was starting, but I'm not due until April 11th. I know chemo most likely cause me to go into menopause, but bleeding is not a sign of it, is it? I don't know now if this bleeding could be just another SE of chemo, or if now I have to start worrying about my other parts from cancer standpoint. I going to the "spa" in a couple of hours, so I will ask then But between finding out yesterday that I need a revision surgery, and this bleeding this morning I'm starting to freak out a little bit again.

    Anybody else had this abnormal bleeding?

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

    Dear Shaz- yes, someday a big pain-free hug in person. I feel the same about you. I never wanted to talk about the dmx because this is a different forum (I had not yet found bco when I was going through the worst) and I know some of our sisters here haven't gone through their surgery yet and didn't want to unnecessarily scare anyone. I really wish to reiterate that most don't experience anything approaching what I did regarding pain. I don't know why it happened. It was like my surgeon didn't believe me. That lack of validation was emotionally crushing. Eventually, my younger brother and uncle stepped in and hired caregivers to come twice a day. 7 days a week. I got worse before I got better. But the brain has an amazing capacity to forget, And now I just know the pain I have now. The past pain is mostly safely locked up in the past.

    I am very grateful, even joyful, that I am taking care of myself again, driving, filling the bird feeders, even some gardening. And maybe because the surgery was so bad for me, the chemo, which I feared so much, has paled somewhat by comparison

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    SC_Coqui, I've been thinking about you. How are you feeling? Are you still in the hospital?

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

    BB- so glad you happen to have a spa day today and can run through with them this scary new SE. Try not to worry. I think they've seen everything at those centers. They will know how to take care of you. In the meantime, a big, gentle hug.

    .

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

    Thank you so much, Princess Karen: it means so much to me that you understand, and care. I admire your finding the silver lining. It's a VERY good life skill to have. And when it deserts you....yes. In the corner, inconsolable.

    My neice is here and we have had a great visit so far. I started a charm bracelet for her and was going to have her open one little package every day. But I couldn't help myself and had her open it all at once. She wore it the rest of the day. Happy times.imagel

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

    yes,Joanna, also thinking about you. If you're fever and infection are under control. If you are ok. Thinking of you. Always

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2015

    imageimage

    Head shave last night. My daughters did the mohawk. It was very temporary!!! My awesome work friends joined me in the shave. We had a blast! Port surgery this morning was great. The let me stay awake. I went for a walk in the sunshine for a half hour and then headed up to the chemo lounge. Awaitingmy first cocktail.

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

    Kbee- so glad you're getting such wonderful support! And a walk in the sunshine to boot!

    Smooth sailing for your first spa day. Glad the port install was good. Thinking of you today.

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  • eheinrich
    eheinrich Member Posts: 792
    edited March 2015

    I love the Mohawk!

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  • ninjamary
    ninjamary Member Posts: 306
    edited March 2015

    Kbee,

    How fantastically awesome!

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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    KB, that's wonderful! Hope your first spa day goes uneventfully.

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

    love the Mohawk! I have enough hair left that I feel like a duckling, especially when the wind blows in my remaining hair. It tickles.

    Still doing great so far, am still so shocked. Other than the funky mouth thing, all else is going well!

    And yes, did my bike ride yesterday. Little slower than normal, but still hanging in there. Nadir appointment on Thursday.

    I figured out yesterday that eating salad is terrible, gave me indigestion pretty bad. The foods that have the most flavor are lemon juice in water, grapefruit and vinegar. So I guess I still have my sour receptor taste buds. Love, love, love the grapefruit.

    I hope SC is doing ok, concerned she hasn't posted.

    Katy, your niece looks so much like you. Hope you guys have a great visit.

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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    Hi ladies,

    I'm still at the hospital. My husband and son are still in Florida at Legoland today and supposed to be driving back tomorrow. I'm hoping for release tomorrow so that they can pick me up on the drive home. I'm at the mercy of the infectious disease doctor. I was told that all the bacterial tests they ran came back negative. I haven't been told what my WBC came back as. They drew blood last night. My port is working again! Yay!

    I have to call my doctor's office tomorrow and see what they want to do. It's a coin toss as to whether or not they'll keep me on my infusion schedule. I don't know how much that'll affect the efficacy of my treatment If we need to delay a week.

    I'm at the point where I'm tired of being in a hospital. The food here is horrible! Anyway, hopefully I'll be sprung out soon!

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  • Jem27
    Jem27 Member Posts: 15
    edited March 2015

    Thank you for the welcome. You are all amazing ladies, sharing your stories has made me feel so much better and brought a smile to my face on several occasions. My story is dx Jan 5th , invasive bc, right side, grade 3, had mri to make sure nothing on the left side, more biopsies, partial mastectomy with breast lift on Feb 20th, confirmed sentinel node involvement March 2nd. PET/CT scan, no further spread seen, echo and started chemo Mar. 20th.

    My MO doesn't particularly like ports so I don't have one. My first chemo session started with taking Emend 1hr before, nurse put in iv cannula, had iv steroids and Aloxi ( same family as Zofran anti-nausea ), slow iv push of Adriamycin, nurse had me suck small ice chips while doing this, said it helps minimize SE, must of worked , my mouth was fine. Then Cytoxan via pump. It took 2 hrs from start to finish. I felt great, until I got home, headache started, took some acetaminophen , drank lots of fluids 3litres over a few hours, then 3 hrs home, nausea, dizziness, going whiter than white set in and I could not pee not mater how many times I went to the bathroom.  I took a metoclopramide tab as the Zofran bottle said may cause headaches and my head was  already pounding. It didn't help, phoned MO on call 5hrs after getting home, he said to take a Lorazapam tab it might help relax me and help me pee, no joy. I just felt loopy now on top of everything else. Ended up going to Urgent Care, eventually seen by Dr., did a bladder scan and only 200 mls there. Where the h did the 3 liters go ?? Got catheterized as I still couldn't go. The lights in the UC were really making the headache so much worse, told me it was a migraine, gave me IM Phenergan and sent me home. Thankfully the Phenergan knocked me out, though I was able to get up and pee several times during the night !!!

    I had waves of nausea on and off , I found eating actually helped. I felt a little blah the first week but this week I feel great . My mouth is a little sore, doing the salt/water and Biotene stuff. ( Dr. said avoid any products with alcohol)  My scalp is a little tingly but no hair loss yet. Day 12 today. I got a balance prosthesis to even the girls out until I have reconstructive surgery on my right breast next year whenever.  I met with my MO last week to tell her about 1st chemo. I felt she trivialized the whole thing " so you had a migraine and not being able to pass urine has nothing to do with chemo" I felt like saying I have never had problems before and chemo is the only new thing  that happened that day, but I didn't. Saying that, she has arranged I see a migraine specialist next week before my next round.

    italychick I think we are going to same wig lady, so so nice and helpful. In chemo info class they did say Brachs lemon drops help with taste so maybe acidic is the way to go.

    I know some of you suffer migraines, any suggestions? I am dreading my next round of chemo. Anyone have the lack of pee issue !! ? All suggestions gratefully accepted. Sorry this is so long, I promise future posts will be a lot shorter. Hugs to all

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  • ninjamary
    ninjamary Member Posts: 306
    edited March 2015

    Jem,

    Hello. I can't imagine not having a port. It's not the greatest looking thing in the world, but it makes chemo infusion easier. Especially with the Adriamycin as that stuff is toxic. Though I can't wait to have the damn thing removed so what do I know.

    I used to suffer horrible migraines. I did get a round of headaches this past infusion. Wasn't a migraine, but it was worse than a regular headache. You should get some migraine meds as that is all that worked for me. In the meantime ..caffeine and Excedrin Migraine are good substitutes.

    Sometimes I wish I had an MO who has actually been through chemo. I go for my follow-up with the nurse (MO on vacation) and I'm asking for a change in nausea meds. My meds are anti-psychotics and you have to take them right when you THINK you may have nausea. I took three and I am in serious constipation pain. It's horrible. I requested Zofran before all this started and they said they don't prescribe that medicine. My paranoid mind is wondering if they are getting kick-backs from the drug rep for the junk they gave me. I'm waiting for the battle that it's not the anti-psychotics that caused my constipation and to keep trying. No thank you.

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

    Jem: Ugh, your MO. Seriously? I am sorry you had such a hard time but good you were finally able to go.

    I was told lemon heads but so far the only ones eating them are my kids. :)

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

    I HATE the port. It STILL HURTS.

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

    BTW, anyone else notice sinus issues, runny nose, nose bleeds? I am able to stop the nosebleeds relatively quickly so I am not terribly worried. I think it is from all the nose blowing. It almost feels like an allergy/

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Diane how are you going? I'm hoping that your SE have settled down and your out doing something nice. 

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Jem, I'm so sorry you had a migraine. I hope it is a once off. There are so many migraine meds out there. Hopefully the Dr can find one that works for you. I've had migraines since I was in primary school. My mum and daughter also suffer from them. I haven't found much that helps me that well over the years. The best drug that works for me was called 'cafegot' suppositories they no longer make that here. I now have them compounded, which is expensive but I don't have a choice. I also get what used to be 'stemitel' suppositories compounded. Another drug the drug companies decided didn't make enough money!!!! Only sopositories help me. When migraines ocurr your stomach slows down so drugs tablets aren't very affective. I also throw up a lot, so again I need suppositories. Unfortunately the only drug that's been effective for me they have told me I can't take for 5 days after chemo as it can cause problems. The only other drug that can help me is prolodone (30mg of oxy) again a suppository. I hate taking them as they dont really get rid of my pain, they just help me sleep through it and I often get a rebound headache from it, so a cycle begins. I've been very naughty this round. I couldn't bare the pain any longer and took the cafegot on day 3. I didn't experience any issue, and seriously I just wanted someone to shoot me by that stage! 

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    Jem27, I used to have migraines frequently, and they hit on my first infusion day. I put a ice block on the back of my neck during the remaining infusions. Strangely, I haven't had a headache since I finished chemo on 11/25. A good side effect I hope. Maybe try the ice pack and see if it helps.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    Trvler, I had a nightly nose bleed, mostly when I was on Taxol. It stopped several weeks after, but still happens from time to time. However the runny nose has gotten better, but hasn't stopped. Very annoying.


    I have a cool moist humidifier and it seems to help a lot. And my apartment is much more comfortable now. It does help with breathing issues.

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  • ninjamary
    ninjamary Member Posts: 306
    edited March 2015

    Trvler,

    OMG I have the same thing minus the nose bleeds. I'm congested, keep blowing my nose and nothing works. I'm officially a mouth breather at night.

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited March 2015

    KBee,

    I had chemo #2 today, so I think I'm exactly one treatment ahead of you. I have 4 more doses of TCHP. My port hurt for about 3 days. I can't imagine going in for chemo right after my procedure. You are such a trooper. I'm holding your hand through this round!

    Trvler,

    My nose runs constantly, and I had a nosebleed on Sunday morning that woke me out of bed. It wasn't a gusher, but it lasted about 30 minutes. My MO said that anything over 15 minutes warrants a page.


    BBwithBC45,

    I had some abnormal uterine bleeding too. I've struggled with PCOS for years, but the progesterone/estrogen they were using to treat it caused the perfect storm since I am now triple positive. They feel that my bleeding is probably due to PCOS, but it is certainly annoying. I will be getting a hysto when I'm done with my BC treatments, because I am no longer a candidate for hormones, and the hyperplasia puts me at a higher risk of uterine cancer. If your bleeding continues, make sure the onco is checking your platelets and RBC count often. Heavy or prolonged blood loss can exacerbate thrombocytopenia and anemia from chemo, and they'll want to keep an eye on everything to prevent delays in treatment.



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  • StacyMc329
    StacyMc329 Member Posts: 48
    edited March 2015

    I had my first cycle today. Been home for about 3 hrs and have a headache and can't seem to sleep. Grrr. Anxious to see how the rest of the week goes.

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

    Stacy: The steroid will make you jittery. You are taking steroids for 2 days, right? I was given something to sleep for the first two nights.

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  • eheinrich
    eheinrich Member Posts: 792
    edited March 2015

    I also have sinus things. Mostly slight sinus headache and post nasal drip. Today I am less peppy. My legs (and head) are so tired. Just from my hips down. Feels like I ran a marathon.

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

    jem27 awesome we both see Patti. My oncologist is Laurie Frakes in Encintas since I live in Carlsbad. What a small world! I love, love, love Patti.

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  • neverthought
    neverthought Member Posts: 90
    edited March 2015

    I had a solid 5 days of migraine like headache starting day after Neulasta. Nothing worked until MO said I could take aspirin, as usually Anacin works for me.  All it took was an aspirin and really strong cup of tea to banish headache.  I guess aspirin not the best idea - headaches stopped but then the nosebleeds started, gushers in middle of night, blood dripping while in line at drugstore and at work and lasted about 10 days, with runny nose the whole time that I couldn't blow.  Not much fun especially when I developed a tooth abcess and had to get a root canal and had to breath through my nose somehow.  Then foot and hand syndrome so switched antibiotics. Now headaches are gone, nosebleeds stopped, but worried about getting infusion tomorrow since just had part 2 of root canal yesterday and only have a temporarily filling and some cotton stuffed in the tooth under the temp filling.  Would it be better to wait until at least finished with antibiotics? Am so nervous about infection, foot and hand syndrome and hives from Neulasta.  I am freaking out. MO and her people are very kind but feel like they're not really listening.

    Am so surprised and grateful about how everyone is so brave to share their experiences and photos in these forums.  It has helped so much to know I am not alone.  Maybe I will get brave enough to show my shiny pink head, but I can barely look at it myself.

    Thank you everyone.  Just trying to remind myself this is only temporary and snowdrops in the garden will be opening any day now.

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