Starting Chemo May 2018

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  • Heatherautumn
    Heatherautumn Member Posts: 38
    edited July 2018

    So weird, my LIPS are going a little numb. Anyone else? I had my 3rd AC a week ago.

  • urdrago71
    urdrago71 Member Posts: 559
    edited July 2018

    hellos, just dropping in from April group. But no I havent heard of that and if it last plz call ur MO..

  • BigPeaches
    BigPeaches Member Posts: 266
    edited July 2018

    Heather, I have that occasionally too, as well as different parts of my face and eye twitching. I have mets in my face though.......

  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    I'm excited to have my first few Herceptin-only appointments scheduled. I still have five T+H but I like looking at them on my calendar, being able to plan around them, . . . . Last T+H will be August 2nd, first H only will be August 10th (I've been on a Friday schedule but had to move my last T+H up because of work). Kind of nice to have that three-week break in between appointments!! (Still waiting to get on the books with my RO's office. MO's office called them Friday to say I'd be finished with chemo 8/2 and could start scheduling preliminary rads stuff but someone wrote it down as 8/21. :-( )

  • wlo002
    wlo002 Member Posts: 46
    edited July 2018

    That is exciting Ingerp...the end is in sight!

    Big peaches - I have the eye twitch, too. On another blog, I saw that several women getting TCHP/THP complained of eye twitches.

    Crazy question - After most of my hair fell out, I used the clippers without a guard and cut the remaining down to stubble, but didn't shave it. It hasn't grown any since. I have new hair coming in (it's soft and baby fine...I love it! And I don't have a clue why it's coming in while I'm still getting chemo.) It's now longer than the original hair. So what do I do? Do I clip it and keep in all short? Do I shave it down to skin so only the new hair grows and I don't have the bristly leftover hair?


  • urdrago71
    urdrago71 Member Posts: 559
    edited July 2018

    Wlo002- im on taxol and got little hair growing faster than the rest. Like you i never shaved my head bald ..but been trimming the longer piece til they all start to grow. Dont have a clue !!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    I have my hair at 1/8” and if I had random hairs showing up would probably keep buzzing until it all starts growing in.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited July 2018

    I'm having hair issues as well, it's like I have one row that's growing, it's weird. Also, I haven't had to shave my legs all summer so far, but noticed yesterday that I have stubble, even though I'm still in treatment.

    Heather, I remembered when I was in the hospital, one of the nurses told me the face numbness could be my lack of potassium too, I'm taking potassium now and it has gotten much better.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    Oh yeah! Potassium. I had really good blood work one week--in hindsight that might have been when I was eating a banana every day. Trying to re-start that this week. We'll see how it goes. . .

  • iwannaseeyoubebrave
    iwannaseeyoubebrave Member Posts: 226
    edited July 2018

    Hello beautiful ones! I hope everyone is doing their best. Just a quick update on my mom, she just finished her round of AC this past Monday (4 total infusions over 8 weeks). She had her ultrasound this morning and we were pleased to hear that the tumors and lymph nodes are shrinking! Next round is 12 weeks of Taxol that starts on 7/23. Things have been mostly uneventful for her during this round. Her ankles starting swelling last weekend but could be due to doing too much with her great grandchildren and the heat. This is such a long journey that it's best to find those milestones when they pop up. All the best to you, Susan

  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    That's awesome that she has one part behind her. I believe most women have fewer issues with T than with AC. Fingers crossed it works out that way for her!

  • BigPeaches
    BigPeaches Member Posts: 266
    edited July 2018

    I have my last infusion with Taxetere tomorrow, then it's just Herceptin and Projeta. Hopefully this time a round we have the side effects managed better, you'd think we'd be pro's at this by now!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    Yeah BigPeaches! I decided I am going to start counting down the days to my last Taxol--I am SOOOOO looking forward to that. (18 as of today!) When will you have your fist H and P? My first H only will be one week after the last T.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited July 2018

    I go back in 3 weeks and then it will just be H&P. I'm still struggling with this procrit decision. They want me to have it every week and I'm just not feeling that idea with all I've read about it, my hemoglogin is a 9.5, just below the 10 threshhold to get the drug and I went ahead and let them give it to me yesterday (burns like fire too).

    The decisions we are constantly faced with *sigh*

  • Proud_Patriot
    Proud_Patriot Member Posts: 27
    edited July 2018

    BigPeaches-Why does your oncologist want to give you Procrit? My current hemoglobin is 9.2 and I was told to eat more iron. If that doesn't help maybe I would go to iron supplement, then transfusion (only if hemoglobin goes lower). Procrit is a last resort for her. Risks are pretty high.

  • Hybrids
    Hybrids Member Posts: 42
    edited July 2018

    Hi all,

    Just checking in. I don't post much but I read on here a lot. I had TCHP #4 of 6 on Friday. Normally I do it on Thursdays so my schedule is a little weird this time around but so far so good. I've had good cycles and bad cycles. Seems to be random. My biggest issue is keeping up with working out the week after chemo. I feel "loose/unbalanced" so my cardio is pretty sloppy and I don't have energy to finish my daily workouts during that week but I'm trying to keep up, even if I only do 1/2 of my workout in a 1/2-assed way for those days. I worry about losing my balance or twisting an ankle while working out. I'm jst fuzzy headed/unstable, kind of hard to explain. I assume it's a normal part of chemo. No neuropathy & the nausea meds are working great. Yay!

    I hope everyone is doing well. Does anyone get restless? It's annoying to not have normal energy to go out and do stuff but still want the mental stimulation. It doesn't help that it's been super hot outside so going hiking/walking is not really an option. It wouldn't be as big of an issue if the weather was cooler so I could get outside and enjoy the day without frying!

    I was diagnosed with a hyperthyroidism/Grave's Disease recurrence a few months before my bc diagnosis that made my heart rate too fast. Luckily, the meds they prescribed for it started working quickly and that coupled with Propranolol lowered my heart rate to normal. Unfortunately, I've noticed since starting chemo, that the week after I have chemo, my resting heart rate starts jumping up over 100, & goes really high when I work out. It goes back down to normal the week after. I've talked it over with my Endocrinologist & my Oncologist & they've both said it will be hard to pinpoint exactly which is causing it (graves/chemo) but it's likely a combo of both. For now, they've said I can keep using Propranolol to help manage the heart rate but its a little annoying, since other than the week after chemo, my heart rate stays down in the 60's & 70's. It's just that one week that it goes up to high. Is this something a lot of people deal with? I'm just curious how much of it is just chemo or if it really is chemo combined with Graves. I'm hoping it's just chemo since my Graves is controlled right now and this fluctuation doesn't put my heart under any undo stress (I'm sure the herceptin/perjeta is stress enough).ETA: I'll have another echo towards the middle of next month, as a normal course of treatment.

    Thanks for listening to the chemo brain vent! I hope everyone is doing well.

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited July 2018

    Hi, Hybrids! I also had Graves 15 years ago. At that time I was treated with radioactive iodine, so now I am hypothyroid. I had no idea it’s possible to have a recurrence of Graves! What kind of treatment did you getfirst time around? So sorry you have to deal with both of these diseases at the same time!

  • Hybrids
    Hybrids Member Posts: 42
    edited July 2018

    Hello InnaB2018, fellow Graver! I was treated with Methimazole the first time I had an occurrence (in 2009). No Propranolol last time because my heart rate was only a little elevated at the time. They caught it early during a routine health screen. Within two months of going on the Methimazole, my thyroid numbers were normal and my Grave's antibodies had started to subside. I believe I stayed on Methimazole for around one year and then they weaned me off and said I was in remission. I've been told they've since determined 18 months to two years is a better length of time to be on it for hopes of full remission.

    This time when it came back, I knew instantly something was wrong. I was all out of sorts and have never felt so rough in my life. After a few weeks of feeling horrible, the Drs did blood work and confirmed hyperthyroidism & Grave's antibodies and then did all the thyroid scans, etc to figure out the best course of treatment. Unfortunately, I started showing signs of Thyroid Eye Disease this time around but luckily they've subsided with treatment.

    They've mentioned using radioactive iodine to kill my thyroid as a last resort but since the Grave's antibodies are attackingmy eyes and not just my thyroid, the fear is if they killed my thyroid the antibodies would full force attack my eyes, which isn't a good option, so the goal is to get the Grave's antibodies under control by giving my body time to adjust to normal thyroid levels using the methimazole. Last time it worked fairly quickly (minus the eye issues I didn't have then) so my Endo's hope is it will do the same this time. I'm pretty hopeful it will also since my eyes were swollen before treatment & had a lot of pressure behind them and now they're back to normal.

    Thanks for the well wishes! I'm glad that the radioactive iodine was a good option and it worked but so sorry you have to deal with being hypothyroid! It's really a shame there's just not more they can do for curing thyroid issues rather than only treating the symptoms. Here's hoping your hypothyproid symptoms are well controlled and not giving you too much aggravation.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited July 2018

    That's what I'm starting to think about the Procrit, I'm going to deny it from now on and just eat more iron. Red meat!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    BigPeaches—I’ve posted this elsewhere but I’ve really been pushing the protein and my blood levels have been really good. We’re probably eating red meat five nights a week, plus I’m drinking a protein shake every day. It’s worked well for me.

  • Hybrids
    Hybrids Member Posts: 42
    edited August 2018

    Hi all,

    Just doing a check-in and a warning. I had #5 TCHP of 6 yesterday. After #6, I switch to just the HP. Yay!!

    I wanted to warn everyone about an unexpected critical low I hit for Potassium & Magnesium this week. I see an Endocronologist for my Grave's Disease and I had regularly scheduled bloodwork with her on Wednesday. If I had thought of it, I would've had her request the bloodwork she needed from my infusion center since they always do bloodwork before my chemo, which was the next day, but luckily I didn't think about it. They called me a few hours after they did the bloodwork (I didn't get the message for about 5 or 6 hours) and my potassium had hit a critical low of 2.5. I had no symptoms at all, at least none that I noticed. I picked up the potassium pills they had for me and by the time they did my bloodwork the next day before chemo, my potassium was within normal range but my magnesium had dropped to a critical low of 1.0,so they gave me some a magnesium drip and I have to take supplements for it.

    I did have repeat charlie horses in both feet and calves the night before, but I thought they were from my potassium level being low and didn't think about it being from something else. They told me if I get any new symptoms at all, to be sure and call them in, just in case. I thought I'd send out a warning to everyone since those are life threatening conditions and it seems the symptoms can be either non-existent (in which case it can be too late if they go to low) or the symptoms can be minor enough that you don't think anything of it. Listen to everything your body tells you and call the symptoms in. In my case, there was nothing to call in with the potassium drop but I could've called about charlie horses, even though I assumed it was from potassium. Luckily, it wasn't too late and I had no serious issues or damage.

    Just want to make sure everyone is diligent. Oh, and to warn everyone, the potassium pills suck. They're horse pills. In other news, chemo #5 went though fine. Not looking forward to next weeks symptoms, especially knowing the diarrhea can cause potassium & magnesium problems again, but hopefully the potassium script & the magnesium supplements will avoid that. It's nice to hear everyone is pushing along and doing as well as can be expected. I love reading everyone's updates!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Hey sisters—FINISHED WITH TAXOL!!!!

  • Hybrids
    Hybrids Member Posts: 42
    edited August 2018

    Congratulations, Ingerp! What a great milestone.

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited August 2018

    Congrats, Ingerp! Have a drink on me

  • iwannaseeyoubebrave
    iwannaseeyoubebrave Member Posts: 226
    edited August 2018

    Congratulations Ingerp!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    InnaB I had one for you + one for several others. ;-)

  • baseballgymnasticsmom
    baseballgymnasticsmom Member Posts: 1
    edited August 2018

    I'm late to the party but started my treatments in May. I've completed 5/6. And I NEVER want to have to do this again. It's amazing all the similarities between us all. I've started with some major eye twitching just this week, which could be a magnesium thing. Mine is low and I'm taking supplements as well. I also got an IV dose, along with potassium, after my 3rd treatment when I ended up in the hospital with neutropenic fever. This is just an up and down road, which I'm ready to detour far away from. Good luck to some and Congrats to others.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Welcome and sorry you are here, baseball. I've been having a little eye twitching too but not bad. I'm looking forward to all of these silly SEs leaving--had my last Taxol on Friday. (WOOT WOOT!!)

  • cccmc2
    cccmc2 Member Posts: 131
    edited August 2018

    congrats Ingerp!!

    I have 2nd DD Taxol this week. Light at the end of the tunnel! Well wishes to everyone!!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Hang in there, cccmc2!!

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