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August 2015 Chemo Group

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Comments

  • pavlovsbell
    pavlovsbell Member Posts: 16

    Hello all,

    Im finally in a chemo group, yay! As odd as that sounds, I was initially supposed to be in July, but due to numerous incision healing issues and a couple of extra surgical procedures, everything got pushed until August. And I start today--in about 2 hours. I'm slotted for four rounds of AC and then four rounds of Taxol.

    I had my port placed last week, but I was under general anesthesia because I had another surgical procedure at the same time. Yes, it was sore a couple of days, but I think it will be worth it. I'm an IV nurse and I see everyday, firsthand, exactly how valuable these things are.

    So, I have my tablet, my water, and my chapstick ready to go with me today. Think I will take a few crackers or something, just in case. Seems like I'm forgetting something important. At home, I have a few things ready as well- bought some Claritin for the bone pain, got Biotene mouth rinse, meds for diarrhea and constipation both. Again, I feel like I'm forgetting something important. When I figure out what it was, I will let you guys know so that you can remember them on your trips :)

    JenPam- I totally understand what you are saying! Like you, I'm not doom and gloom, but damn, every now and then, it sure would be nice for those around me to validate my feelings of what is absolutely a possibility. Even talking about chemo to my family, I mentioned that as I start today, I will likely feel "fine" today and tomorrow, but whatever is going to hit, will likely hit on Saturday. My husband now thinks I'm "willing" myself into nausea and feeling bad. Same thing with my particular brand of cancer...it scares me, and rightfully so, but if he tells me one more time that I just need to "think positive" I may smack him. It's so frustrating.

    Wish me luck! May we all be free of side effects this week.

    Jessica


  • Bunnybumps
    Bunnybumps Member Posts: 37
    Hi Pavlovsbell, you're the first person I've seen with a nearly identical dx to mine, and chemo plan the same as mine. Best of luck and let us know how it goes!

    To everyone talking about being the strong one or not feeling acknowledged when you're expressing negative doom and gloom emotions: sometimes being strong is showing yourself at your most vulnerable, and crying doesn't mean you're weak. I hate it, too! But I cry a lot more now than I used to and I think it's been good for those around me to see that I'm not a rock, I'm a person with cancer and it scares me. It doesn't mean I won't move forward either. But it means I'm human and sometimes I just need someone to hold my hand while I face this.

    And I'm grateful for everyone on this site for doing that when no one else can. xxxooo
  • KateB79
    KateB79 Member Posts: 555

    Bunnybumps, you just hit the nail on the head. Being vulnerable takes more strength than being seemingly-impervious . . . and if that's the one thing I learn from all of this, it's still a silver lining.

    I also echo your gratitude about our group here. It's great to have a place to come, to vent, to be scared, and to ask questions. :)

    xo

    kate

  • SDCA76
    SDCA76 Member Posts: 27

    I am also embarking on my chemo journey in August. Neoadjuvant therapy was recommended for me so it seems a bit strange since most people seem to have surgery first. My port will be placed in 4 days, followed by my first treatment a week later. I am nervous about the side effects but am glad to have found this discussion board to learn and share experiences. Good luck to all in our quest for healing!

  • CassieCat
    CassieCat Member Posts: 863

    Hello all. I wanted to pop in and say hi. I was in the August 2014 chemo group, and that group of ladies was a life saver for me. The support I had, being a part of that group, is immeasurable. I hope you all find the same to be true for you here. I'm now coming up on the one-year anniversary of my diagnosis and so far have remained cancer-free as far as we can tell. Best of luck to each one of you. xo

  • pavlovsbell
    pavlovsbell Member Posts: 16

    So, I'm back home and my infusion is all done. I was there for almost 4 hours, but that is only because they wanted to evaluate me for a reaction. We've determined that I had more of an unusual "side effect" than reaction. When they started the Cytoxan, I experienced a fairly significant burning sensation in my nasal passages. I just figured the air was dry in the office, but my husband mentioned it to the nurse and then the next thing I knew, there were about 10 people in my room. They gave me some benadryl and I have felt just fine since. I'm tired, but I blame the benadryl. I had everything I needed during the infusion. Maybe my nerves kept me from getting bored? Even better, they placed a body injector on me for my Neulasta tomorrow so I don't have to drive all the way back there. I've been loading up on water for the past 2 days, hoping to lessen any side effects. Hoping to cut my hair over the next week...my teenage daughter wants to play hairdresser, lol. I figure it's the perfect excuse for me to try styles that I would otherwise never commit to. And, we will have some sort of shave event, but not sure when yet. I've found that I'm spending time "touching" my hair more than normal. I'm wearing it down more, whereas I used to always wear it up. I'm hoping all this pre-emptive grieving will make it easier, but I'm bracing myself. Attaching a picture that I will look back on with fondness- one that embodies my messy hair that I've cursed a thousand times but suddenly love.

    Bunnybumps- It is always a bit comforting to find another person whose diagnosis closely mirrors mine. I have seen many other TNs with different treatment plans and this always causes me to take pause. I'm really hoping (and expecting) this particular plan will work it's magic. I hope you have been over to the Triple Negative forums as well. I am surprised to find so many of us.

    Kate- As a fellow person diagnosed before age 40, I am glad you are here. I too, am scared, but know I am not alone, which helps. When I'm home, with family, with friends, at work...I'm alone. Well, not technically- I have their support, but am alone in the intimacy of having the diagnosis. I'm not alone here, and that is priceless.

    SDCA76- Glad you are here to join your voice and your experiences. Do you have a date for your first infusion yet? Initially, I was to have my port placed on a Wednesday and first infusion on Thursday. Once the port was scheduled, they put everything in high gear.

    CassieCat- Thank you SO much for popping back in and happy anniversary!!

    image

    Wishing everyone a restful night tonight!

    Jessica


  • justamom
    justamom Member Posts: 4

    Hello everyone. I got my port 8/6 and start neoadjuvantt AC+T 8/7. I'm ready to get started so that I can get finished!

  • JenPam
    JenPam Member Posts: 163

    Jessica, you have such beautiful hair! Re: the sinus pressure, my oncology nurse today told me that it's a common side effect for people who are given Cytoxan. As she gave me the infusion, she told me that I should let her know if I feel a "squeeze." Apparently it's likely to occur when the bag has about 1/3 left. I was fine until the very end, when I felt some pressure, but it was nothing serious. Had I begun having painful pressure, my nurse would have slowed down the drip. The next time you get the Cytoxan, ask for the infusion to be slowed down considerably, and hopefully you won't have the same reaction.

    I had my first AC chemo yesterday (Thursday). I was there for hours, because my amazing oncology nurse gave me lots of information and instruction. My mom and husband were there with me for the advice part, and then my mom stayed with me for the infusions. I had Emend, Adriamycin, and Cytoxan, and then I took both Zofran (anti-nausea) and Decadron (steroid) by mouth. So far so good, though I have a terrible headache. I think it's likely from stress. I'm off to bed (I typically go to sleep at 3 a.m. or later, so you'll see lots of late night posts from me).

    Good and pain-free night to everyone!

    Jenny



  • sio
    sio Member Posts: 12

    I had my first treatment yesterday. It went more-or-less okay. I felt fine after, and normal this morning. The infusion was a little less than pleasant though. They were late starting and I was a little anxious and agitated. My doctor doesn't think a port or picc is necessary, so it's an IV in the forearm. The nurse put the needle in, which went right through the vein. Oooch! A second nurse was summoned to try the needle insertion, which went well, and did not hurt. I hope my veins are going hold up. I have two large swollen bruises at the botched insertion site, which I hope aren't going to be an issue, as I've had lymph nodes removed on both sides.

    I was a little surprised that I wasn't monitored much through the infusion, but was told I could call any of the nurses that were around. Volunteers brought drinks around. I had three large glasses of water, and emptied my bladder at the end. The urine was red coloured, as I was told it would me for up to 24 hours. I have continued drinking massive amounts of fluid and I'm urinating frequently. However, except for the first pee right after the chemo, urine has not been reddish at all. Is that normal? Anyone experience that?

    Happy minimal side-effects for everyone!

  • Tam-iam
    Tam-iam Member Posts: 55

    JenPam, glad it went well! Sio, sorry the infusion didn't go so well. Pavlovsbell, glad you were taken care of so well. Wishing you all minimal side effects.

    Good luck today, Sbeddows and Justamom!


  • buzz328
    buzz328 Member Posts: 17

    I had my port placed this morning. We got there at 6 and left at 10. They gave me Versed & Propofol so I was completely out and didn't feel a thing during the procedure. When I woke up, I didn't have any nausea or pain, but as the medicines wore off I've gotten really sore. My neck is sore like a pulled muscle and then of course it's really tender near the port. But this is just one more step toward the finish line! When you're having infusions, are you allowed to use the restroom?

  • ksusan
    ksusan Member Posts: 461

    Buzz, I think your A will be administered as an IV push, and your C probably from a bag on an IV pole. You can wheel the pole to the restroom--they have batteries so they can be unplugged.

  • Bunnybumps
    Bunnybumps Member Posts: 37

    buzz328: Good question! I was wondering that myself...

  • ksusan
    ksusan Member Posts: 461

    I did Taxotere/Cytoxen x 4 from April through June and July, and I'm now about 2/3 through radiation. If I can be helpful, please let me know!

  • superius
    superius Member Posts: 310

    Sio, sorry to hear about you experience. At my Chemo place, they have reserved seats next to the nurse station for First-Timers.

    I had my first session 7/27. TC x4. side effects seem to be minimum -- tired for a few days, nausea, lost appetite. & I think my hair is starting to thin out today... The worse part was from the Neupogen shots. headache, dizzy (like I'm on a boat) & low grade fever.

    I will have a picc line for the next 3 cycle -- my veins are too deep/ small & they don't want to risk anything.

    I had Mastectomy mid-June. HR/PR +, FISH -ve, Lymph node -ve. but Oncotype score at 27 (hence the chemo).


  • sbeddows
    sbeddows Member Posts: 7

    I think it is around 2.5 to 3cm @bunnybumps :)

    My body isn't too happy with the chemo I hope it isn't going to get too much worse :(The A was manually pushed for me and the C was via IV... that's when the fun began.... I experienced a huge head rush the felt like I was going to pass out and finally my heart went 10 to the dozen.....IV was stopped....benadryl was given....IV restarted at a slower rate which I somehow managed to gwt through. I feel like poop now but I am guessing that was the benedryl rather than chemo....I will let you know tomorrow :)

    I went to the washroom a load of times and yes everything was bright pink the first time but things went back to normal after that...

    If you do get a rxn do not panic and know that it will stop as soon as he IV stops and benedryl gets in you....that's the only advice I have :)Also lots and lots of water......and yes the nose thing may happen.....it's similar to when you go underwater and get the pain in your nose......

    Good luck to all of the august ladies.....if I can get through this you definately can :)

  • motherofmany
    motherofmany Member Posts: 38

    Hi ladies I am starting chemo 8/27 and would like to join this group. I have 6 rounds and am so afraid of being extremely sick, since I am so sensitive to medications already. I will be taking Docetaxel and Carboplatin and Herceptin combination. I'm happy to see younger people on here too. Thank you all for sharing thus far. We will get through this together. God bless.

    Jewel

  • justamom
    justamom Member Posts: 4

    So I had my first treatment today and it was not too bad. Since I had my port put in yesterday, I was still in some pain and a bit anxious. I took 1 hydrocone and 1 Ativan before we left the house. Went to the lab for blood work first. After a little while, they took us back to the chemo room and we got settled in. There were not too many patients so we got to use a small tv tray for my husband's computer so he could work.

    The surgeon left my port accessed after surgery yesterday so that I would not have to deal with that today. He says that sometimes there is swelling and accessing the port with a needle can be painful. We had a great nurse, she was able to flush the port fine but with Adriamycin, they have to be able to pull blood as well. She tried several times and we agreed that she would remove the access and put in a new one. It was not that painful after all. Maybe the meds I took earlier helped with that!

    I received 2 different anti nausea drugs and a steroid and I actually fell asleep for a while because of the medicines I took earlier. Then I had Adriamycin which took about 10 minutes follow by Cytoxan. No issues with either one. For those who were asking, I was able to go to the restroom at any time. Just unplug from the wall and roll the pole with you. It has a battery and keeps going.

    Our hospital also provides nurse navigators and our has been really great. She visited me yesterday early in the morning at the day hospital before the port surgery and came by the chemo room today with information about nutrition classes and make up classes and a package of ginger cookies! She is so easy to talk to, she has lots of information and she is never rushed to get to another patient.

    After we came out, we had lunch and then I was ready for a nap. Went wig shopping and ate dinner and now I am just sitting on the couch.

    Tomorrow I go back for the Neulasta and start steroid pills and anti nausea pills for 3 days.

    I took claritin today and plan to use that the day of the injection and the day after just in case to prevent bone pain.

    I took at stool softener as well just in case.

    I hope I can sleep tonight. I've had trouble with that and now with the steroids, I may have more trouble.

  • pavlovsbell
    pavlovsbell Member Posts: 16

    I hope everyone is doing well this beautiful morning! And that everyone slept well :) I slept for 5 hours--think the steroids are playing with me a bit. I was so tired when I went to bed too...I went scarf shopping with my daughter yesterday. I decided to do a "turban trial" since I think I'm not much of a wig person. We put my head in a lovely infinity scarf and hit the mall! My kiddo is much more sensitive to the stares and such than I am, but I want to get "more used" to this sort of thing. I want to go ahead and immerse myself in how this is going to feel instead of having to face that with the hair loss all at the same time. I've attached a picture of our shopping adventure yesterday. I like color coordinating and big earrings! I think more than anything, people were looking at the body injector on my arm for the Neulasta shot. That thing blinks bright green about every 15 seconds, so I'm sure it looked alien-ish. So, as a reminder, I infused on Thursday and I have felt really good so far. If I complained about anything, it would be heartburn/reflux. That could totally be due to the soda and cookies I ate while at the mall yesterday! My body is probably in shock, but it was SO good! Hoping for another feel good day today. In the spirit of bonding, and because it's going to fall out in a couple of weeks, I've agreed to let my 13 year--old daughter give me a haircut and wild color. Think we're going for a blue shade. Oh dear.

    Jenny- I so wish they had let me know about the sinus pressure being somewhat normal. Their reaction to the ordeal freaked me out a bit more than the pressure did. I'm glad your onco nurse was amazing. I think mine was less than stellar. I know I view them from a critical eye because I'm a nurse too, but literally, she barely scrubbed my port (maybe 10 seconds?) before she accessed it. AND, she accessed it without letting it dry first and she did not offer me a mask or ask me to turn my head. I'm very anal when I access ports, the infection risk is just too darn high. Next infusion I am going to "softly" speak up.

    Sio- I'm not sure exactly which drugs you are getting, but I see that you and I have a mirror diagnosis. Most of these drugs are extremely hard on the vasculature. In my case, I had nodes removed for biopsy from my right arm, which then only leaves my left arm as my "good" arm for life. I can't risk ruining the veins in my "good" arm with chemo, else I'm setting myself up for a lifetime of central lines in the face of illness. I think I would really push for a PICC line at least. I put in PICC lines as my job. It's easy breezy and you could have one in in less than 30 minutes by a certified PICC nurse. No. doctor. needed.....other than writing the order. I'm assuming you have those types of nurses in Ontario? And yes, I was told that my urine would be red for a day or two. It was red one time, that was it! I'm really pushing the fluids. Drinking a minimum of 3 liters of water per day to lessen the side effects.

    Buzz328- I think I got up two or three times during my infusion :) As I was telling Sio, I'm really pushing fluids the day before, day of and at plan on at least 3 days after my infusion to lessen side effects. So, I'm taking in a minimum of 3 liters per day. I usually drink about 2 liters anyhow, so it's not much of a shock to my body, but I'm doing all that I can to make this bearable. My place only has 2 restrooms for an unknown number of patients. Talk about poor planning!

    Jewel- Welcome to our group! We are all figuring this out together.

    Justamom- I'm so glad things went well for you! Also glad to hear that your nurse navigator is helping you along. I met mine when I was diagnosed and that's the last I saw of her. You guys and this site have been far more helpful than anything to me. I am so grateful. I'm taking the Claritin too...the thought of bone pain makes me cringe. I'm taking it for 5 days per the advice of my oncology nurse friend. She says patients swear by it.

    I hope everyone has a great weekend! May we all feel like dancing, even if we don't :)

    Jessica


    image


  • Bunnybumps
    Bunnybumps Member Posts: 37
    Sbeddows, I believe it is customary to have neoadjuvant chemo when the tumor is that size, anything over 2cm, to try and shrink it, then discuss further treatment options.

    Jessica, you look very exotic, and I like the idea of a trial run. I used to sing opera, so I'm used to wigs and still have a few, but they can be very hot. Scarves and caps with a pin here and there will be my thing, I think.

    Kushan, Justamom and Jessica: Thanks for the info on the bathroom runs. I should have realized that, as I've unplugged and went when I've had surgeries, smh!

    I'm reading everyone's posts with great interest. I take Claritin every day for my sinuses, have done for about fifteen years. I had no idea it has anything to do preventing with bone pain.

  • tazbear89
    tazbear89 Member Posts: 35

    I am going to add my 2 cents in. Was supposed to start AC on Aug 13, but due to a bmx incision not healing right and 2 rounds antibiotics, the PS had to do a snip and clip on the incision and took a few tablespoons of fluid with it. So now I am on round 3 of the same antibiotic and added a stronger one to the mix and am doing much better. Found out Thursday that instead of doing AC first, my MO is going to start with Taxol first and then AC since the Taxol is not as harsh and will probably start in 2 weeks instead of next week. A little scared, but I have been doing a lot of reading on things I can do to get through it. Thankfully I had my port put in at time of bmx/recon and it does remind me that it is there if I move a certain way. I have always only had one good arm, so the port was not really an option but a requirement.

    As for the body injector on Neulasta, I wish I could get it. My nurse told me that no one in the Kansas City metro area has even approved in getting it yet. It would make my life easier because I live an hour away from the infusion center. I am hoping that by the time I need it, I can get it, but I am not getting my hopes up.

    Hope to post more as this journey goes on. Going to go do my rom excerises and try to relax the cement blocks in my chest. Have a great day everyone.


  • Bunnybumps
    Bunnybumps Member Posts: 37

    tazbear89, "...cement blocks in my chest." LMAO! I know the feeling!

  • AusUSA
    AusUSA Member Posts: 18

    I thought I had already posted this morning, but it never appeared?

    Anyway, this is my group, so time to join. :)

    I'm Chris, originally from Milwaukee, but living in Melbourne, Australia.

    I was originally supposed to have been in the July chemo group, but I have had so many complications. :( I have a BCS, but 1 margin wasn't clear, so they had to go back 2 weeks later to get that clear margin. Great! But then the wound got not just 1, but *2* superbugs and I am finally nearly healed from the 3rd surgery that was to "wash out" the bugs, but didn't quite get them, so had IV antibiotics (vancomicyn) and an infusion after my PICC line was put in.

    PICC line doesn't work at the moment, will hopefully have it fixed Tuesday, and chemo to start Wednesday as long as the tiny wound I still have that hasn't completely healed (less than 1cm deep and about 1/2 cm wide) heals enough to start.

    I'm set for TC * 4 to get me onto hormone as I have lobular.

    I think a few of us are having this treatment, and others have had similar healing problems as I have, so it's good to have company. :)

    Thanks guys!

    Chris

  • pavlovsbell
    pavlovsbell Member Posts: 16

    Hi Chris, Welcome to our August group! Sounds like you've had a long road getting here. Yes, I think you are correct, there are a few of us that had healing issues. After my initial BMX, I had to go back in for two more procedures due to my skin becoming necrotic on the incisions. Luckily, I never had an infectious issue to deal with, just some stubborn skin with a lack of good blood supply. But, it pushed back starting chemo, which was super frustrating. I'm glad to have finally gotten this all started.

    Everyone- I am currently taking AC- I've had one round. I'm having a really loud ringing in my ears, especially when I go to bed. Sort of like a gunshot went off beside my head and the resultant high pitch ringing is what I'm hearing. Is anyone else experiencing this?

  • mira845
    mira845 Member Posts: 23

    so I had my onc visit Thursday to discuss my options for treatment. She gave me two based on my oncotype score of 10, I have lobular, very estrogen receptor positive, I am pre or peri menopausal, and she said only one of my nodes really matters to her. Full breast Radiation is for sure.

    Option 1: CMF or TC followed by tamoxifin

    Option 2: ovarian suppression with lupron or such and an AI.

    She recommends the second option based on some very recent studies on lobular cancer and hormone supression. She told me to think it over and call her back Monday.

    I have my follow up appointment with my PS tomorrow also. I still have one very stubborn drain. It's still up at 85-95ml a day. This is now over 4 weeks! The 1st drain came out in week one.

    So....I'm leaning heavily towards the ovairian suppression option. I'm super bummed and worried how life will be without estrogen. On the other hand, no chemo....I was terrified of that so it sounds too good to be true.

    Pick your poison, ...which is the better of two evils???

    I hate this.

    But on another note I'm wishing all of you the best possible side effect-less time of this.

  • gooseberry
    gooseberry Member Posts: 39

    I had to delay chemo because of an incision infection. I was to start Aug 3rd, now its aug 24th. 2 rounds of antibiotics and there is no pain or fever and we have had to pack it 2 times a day weeks now so no puss or anything but it is still hard which was a concern or hers... Seems a few here have had similar issues! Going for a recheck tomorrow to see what she thinks now...

  • KateB79
    KateB79 Member Posts: 555

    Welcome to all newcomers to our August group!

    I just want to say again: even though it sucks for each of us to be doing this, I'm glad we're in this together. The support here is fantastic. :)

    I'm counting down until Thursday, when I get my first infusion . . . fingers crossed. I'll keep you posted.

    -kate

  • Mom2ABoy
    Mom2ABoy Member Posts: 125

    Thank you, KateB79, for starting this thread. I almost started one the other day, but then chickened out, LOL.

    I'm joining in because I am supposed to be starting chemo next Friday, not-quite-the-13th, but close enough for jazz.

    My original diagnosis was DCIS, but once they started messing with me, things snowballed (as they tend to do). Then I had a genetic test, and it turned out that in spite of having no family history that I know of, I was BRCA1 positive. Because of that, plus the cancer's aggressiveness (the DCIS was high grade, ER-/PR-/HER2+), my oncologist thinks chemo would be prudent. So I'm on the chemo ride now. E ticket! And here I thought I was just going on the kiddie rides. :)

    I've had to rationalize this for myself, because I did not believe in it. I don't mean scientifically, I know the evidence shows that adjuvant treatment makes a difference to survival. I mean philosophically. I've always thought that if I ever got this diagnosis, I would refuse chemo, and do something 'natural', whatever that might be. But the reality is that the only other way to handle this aggressive of a cancer is to go through radiation, which I don't want to do, or "wait and see" -- and then, mostly likely, go through all of this again, in six months or a year or two years, possibly in a more drastic situation. Since I'm over 50 and post-menopausal already, there just isn't any upside to taking a riskier path.

    So: chemo, here we go. I don't have my notes handy to tell you what all exactly the drugs are that I'm going to be getting, but I know it's two chemo drugs for 12 weeks, plus Herceptin for a year. One thing that may be a little different for me is that my oncologist uses a low-dose weekly regimen instead of large doses every few weeks. Supposedly this method carries fewer side effects, but I'm still prepared to lose my hair. (Sort of. As if one can ever prepare for that, seriously!) I'll also be getting interferon injections. And by "getting" I mean "giving myself". Not looking forward to that, but I do believe it will help boost my immune system.

    As I think someone already said, starting chemo is the beginning of stopping it, so I guess I am just going to dive in. Good luck to all of us. I'm so glad to have this forum and all of you sharing your stories. It helps a lot knowing we aren't alone.

  • JenPam
    JenPam Member Posts: 163

    Good evening everyone! I'm hanging in there, mostly dealing with nausea & some fatigue. I'm off the Zofran (anti-nausea medication) and Decadron (steroid), but I just took my first Compazine, which I've been prescribed as needed for nausea. I finally got to remove my port surgery bandages & take a shower for the first time since Wednesday, which was amazing. It's funny how little things such as getting clean and smelling fresh can be something to anticipate! (At least I know my family appreciates it.)

    My husband gave me my first Neupogen injection last night, and I'm anxious about bone/muscle/joint pain. So far I've had some soreness around the injection site itself, but nothing beyond that. He'll be giving me injections every day for six more days, and then we'll be repeating the cycle for the next three AC treatments. Joy! I was teary last night because I was scared of what the injection would be like, so I had my 21-year-old son hold my hand. He was a trooper, even though he's scared of needles. Usually I rely on my daughters, but his twin sister was out of town, and my 17-year-old daughter has pink eye! Can you believe what great timing it was for her to pick up something so contagious? She wants to hug and kiss me and she can't...poor girl feels like a pariah.

    Jessica - I haven't experienced any ringing in my ears. Honestly, when you read the list of possible side effects, it's astonishing how many things might happen. I wouldn't be surprised by anything, but it all pretty much sucks. Are you still having ringing or has it improved?

    Mira - What a tough decision, and since I'm not a doctor, I'm loath to recommend a path. I'd want a second opinion at the very least, since it's a major step for you to take going forward. I hope your second drain can come out soon!

    How have you all been at keeping up your fluids? I'm shooting for 2 liters a day (or 8 cups in my non-metric world). My oncologist said I should aim for 2 to 3 liters, but I'm only 5'3 (and a half!) and 114 pounds, so that's a LOT of liquid. I'm feeling very queasy when I drink water, but I don't like tea (though I made some ginger tea the other morning to see if it would help...I don't believe it did). I'm drinking soups and some skim milk blended with fruit, but the whole drinking thing is getting tough.

    Since this is where we can talk about unpleasant things (right?), I'm upset to have just read that 50% of HER2 positive mets go to the brain. I know that mets aren't a sure thing, but I'm stage IIIC and I've been told that I have about a 50% chance of recurrence if we get through this part--and a recurrence for me would be stage IV. It's scary contemplating all of what might happen, and I'm trying to do the "one day at a time" thing that seems to work for many people. Hugs to all of you!



  • pavlovsbell
    pavlovsbell Member Posts: 16

    Mira- Yikes, your plate is so full of difficult decisions, and I'm afraid I can't be of much help either. My path was so clear (I guess there is a silver lining somewhere in all of this?) that I didn't really have to make too many decisions on the outset. I had to decide whether to do adjuvant or neoadjuvant, and I knew I wanted whichever they could get to me the fastest. In my case, I'm also BRCA 1+. so a hysterectomy is being recommended for me at the conclusion of my chemo rounds. So, I guess I get the (best, lol) of both worlds? I've had "difficult" ovaries, so they will both come out....:( And good grief, what is up with your remaining drain? That's quite a bit of fluid.

    Gooseberry- please let us know the outcome for tomorrow's recheck!

    Kate- I, as I am sure everyone is, am rooting for you for Thursday.

    Mom2ABoy- you are being brave and vulnerable, all at the same time. I find it helpful to supplement natural things wherever I can...not even so much as to "replace" or be "curative" but to "balance" all the other crap/poison that is being infused into me. My husband is a big nerd and likes to read research (I would rather eat out of the litter pan) but he has brought some interesting things my way. If I can feel better, while all of this "curative" stuff makes me feel worse, then I'm certainly going to give it a whirl. True, some things are probably purely hokey; I just try to make sure I'm doing no harm.

    JenPam- horray for a shower! I'm counting down the days until I get these stupid sutures out of my left breast so I can soak in the tub. I really envision it helping with what I'm perceiving to be joint/bone pain. I wonder if taking Claritin would help with your discomfort around the injection site? I'm betting it would. Yes, this ringing is still going on and it's driving me batty. I need constant noise around me to make it less noticeable. I can't sleep! Thankfully, I'm not having any nausea, but I just took a phenergan to help me sleep anyhow. I can't tell if I'm truly fatigued, as in chemo side effect, or if I'm just so damn tired because I can't sleep due to the ringing? I fell off of my fluid wagon today and probably only got in about 1.5 litres. I've noticed my pee really smells funny when I don't push the fluids. Sorry, probably TMI :) Mets....you're right, such an unpleasant word, and so very scary. I don't think any one of us haven't thought about it. I was not aware about HER2+ and mets, as I'm triple negative, I didn't research much into HER2 at all. Yes, one day at a time. And even though we are told time and time again, not to panic at the first "unusual" we find, we will always have that word in the back of our minds and on the top of our hearts....forever. It's the new normal I guess.

    Here's hoping for phenergan to lull me into a gentle slumber. Five consecutive hours would be oh so sweet.