Starting Chemo March 2016

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    i was having the same "banded" headache, but it's lessened over the last few days. I think, for me, it might have been the Neulasta. I now have the all-over head-squeeze, which is the precursor to the anticipated hair loss in about 4 days. Next will be the itch.

    And today was the first day coffee tastes good again.

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  • WannaCruize
    WannaCruize Member Posts: 66
    edited March 2016

    Nancy,

    Here is the website I used to make my ice packs. http://www.instructables.com/id/Water-Bead-Ice-Pack/ One bonus is that they are super cheap to make. About $3 for the water beads, and $1 for the rubbing alcohol, and the zip lock bags.

    Very easy to make, but I'm taking the bigger ones I made to insert into my Elastogel slippers half-way through, and making them smaller so they fit better. There are 'portion-size' ziplock bags, but be warned, even when double-bagged, sometimes the fluid still leaks out. It's only watered-down rubbing alcohol though, so at least it's sanitary! I'm going to experiment with my Seal-A-Meal bags next.

    I ended up returning the Elastogel Hand Mittens because I found them too heavy and confining, drove me nuts just to have them on. I ended up just inserting my hands into a quart sized ziplock bag that had two smaller 'portion-size' ice packs during chemo. It just made it easier when I wanted a sip of water, or to push my glasses up.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited March 2016

    Ksusan is right about the hydration. Your headache could be related to dehydration as well. You need way more than you would normally. If you put together a little dehydration with all the stress you are under right now, it's the perfect recipe for a whopper of a headache.

    Everyone's hormonal reaction to treatment is different. Knowing the signs as well as I do now, I was having horrible night sweats starting about day 6 or 7. I had already had migraines pre-cancer that were somewhat hormone driven, so I didn't even bat an eye when I started having migraines after my first infusion. It peaked around day 9 and then eased up. Eventually the migraines went away though and I haven't had a single one since. Of course, I'm still in chemopause and my hormones are as flat as a pancake, so that explains my lack of migraines.

    No matter the cause, I hope you get some relief soon.



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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2016

    Also, two more things to keep in mind (are you tired of us old timers yet?).

    Magnesium is a great aid for constipation, and magnesium and potassium can get depleted during chemo. I relied on magnesium to keep things going, and it never failed me.

    The need for protein during chemo is pretty high, so consciously think about the grams of protein (from whatever source) that get ingested each day.

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  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    I was one of those people who found meat disgusting during this whole deal, so I used various protein powders in my morning smoothie--rice bran, pumpkin seed, and whey, in rotation.

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  • MFPM
    MFPM Member Posts: 69
    edited March 2016

    I just joined now, should have awhile ago, so excuse me if I'm a little lost navigating and not sure of some of the terms yet.  I'm Marilyn and had a lumpectomy in January.  What went from preventative radiation turned into chemo , nearly falling off the chair and I'm terrified!  I've been reading things on other sites and want to be informed as to what to expect.  I'd rather be informed that not.  Probably like everyone else, I've been having melt downs, unable to sleep much though exhausted.  It was stage 1 invasive, 1 cm. to which 2 surgeons said it was nothing, not to worry, getting it all, lymph nodes clear! I wasn't aware of the Onco test which came back a 26, intermediate and ER positive, so new Dr. said 10 years of Tamoxifen after treatment.  I was offered CMF, then Cytoxen, Taxotere and Adriamycin to which my cardiologist said no to the A due to heart problems.  I'll be seeing my oncologist again this Tuesday and am thinking C &T might be the best route?  Any ideas or comments?  Does anyone know it it's better than CMF?  I'm so afraid of  facing treatment and a recurrence.  I'm 59, not in the best physical condition or strong, which worries me since I am not really active, though underweight as always, worried if I can handle chemo in the 1st place which is due to start the week after next.  In my mind I'm 16, lol, and probably don't look my age but I'm quite alone in this, barely any support like many.  As I'm sure everyone else is thinking, I never thought I'd be in this position but any help would be very much appreciated.  Thank you!

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  • Melgirl
    Melgirl Member Posts: 165
    edited March 2016

    Hi Marilyn. I'm sorry you find yourself here with us. This site is a great support. This BC business is new to me too. I think the best advice I could give you is to research as much as possible. Get your surgical pathology report and research. And if your current Oncologist does not answer your questions get another opinion.

    We are all in this together.

    Melissa

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  • Jonsey22
    Jonsey22 Member Posts: 100
    edited March 2016

    I have a similar diagnosis MFPM as you can see below. CT sounds right to me for your situation. I didn't get an Oncotype score because it wasn't covered, but i wish I had and if I had a score of 26, I would have opted for CT. I am doing 4 rounds. I am in the first week after the first treatment and it sucks, but it is doable. I don't know how people work, given the side effects I have had this week, but it seems to be improving. I hope it will be one week bad, two weeks good. I would avoid the A if you can due to long term heart problems that can occur. If you have questions, ask away! And welcome. Sorry to meet you under these circumstances.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Hi Marilyn-

    We want to welcome you to BCO! We're sorry you find yourself here, but you've come to the right place for support as you head down this road! As you can see, you're not alone!

    The Mods

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  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    Elle, I am usually on here using my iPhone and it shows all replies in order when they were posted. I saw your reply to me. Thank you. Everything went without a hitch today. Tonight I feel bloated and have the vague headband type headache in my head like the others. I feel tight in my chest as well. It was a long day but glad it was comfortable and the Nurse Practictitioner Lynette was wonderful. UNM Cancer Center is tops. 

    I am thankful for my Dear Hubby who drives me there and back and stays all day. I am very thankful that my son came and visited for 2 hours. It made the time fly. 

    I love all on this thread and pray you all will be doing better tomorrow. God bless. 

    Thanks for the tips. 


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  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    Welcome Marilyn. So sorry you are here. I switched oncologists the Friday before my treatments were scheduled for Monday. I am no longer concerned I am doing the right thing. We are here to encourage each other. God bless. Lore

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    Spotted at Target this evening! A nice selection of summer hats in neutral colors with medium and wide brims for $12.99-$14.99 each. Add the instant coupon they have right now for a $5 off $35 or $15 off $75 accessories purchase plus the usual 5% discount for the red card debit card...and you've got yourself some pretty cheap summer sun protextion and chemo style! I have 18 weeks of Taxol and Carboplatin on the way, so my hair will not be coming back until Fall-ish. The hats are a necessity for me, perhaps others as well.

    I also found a hat store in the UK (London, actually) called suburbanturban, and they show a styling tip for straw and fedora hats with a silk scarf underneath that look very stylish and don't look like they show a bald scalp underneath at all. Very stylish summer look if you go check out that site.

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  • MFPM
    MFPM Member Posts: 69
    edited March 2016

    Hello Everyone and thank you for the nice welcome.  I've been reading and researching so much since I left the hospital setting where they wanted to give me CMF only for convenience, too much of a car ride, afraid of being sick.  I also wanted a more personal treatment, one on one, so I switched a few weeks ago.  Yes, he suggested the CT with Adriamycin and when he suggested heart tests for that one, I told him already that I had been hospitalized with a cardiac problem already, though he seemed like he still wanted me to try.  The cardiologist said no yesterday without hesitation saying he didn't like it.  With the oncologist semi prepared that I can't take it and will tell him this week, with chemo beginning the next, he had told me either the CMF then or I think the CT.  He was easy going about whatever I want, but I don't know, though I'm glad I have a say in the matter.  I'm just a wreck and can barely think straight.  I thought once the surgery was done, that was it.  Not a good surprise and I am terrified.  Jonesy, how are you feeling?  I'd rather know regardless!  

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    MFPM...I commented at one point recently that I hate surprises now, as everything in the diagnosis & establishment of treatment portion seemed like a horrid surprise. Even if I asked questions to prepare, it still ended up being hard and surprising. There's a resource called NCCN.org that has treatment guidelines referenced by many - perhaps that will educate you on some of the options you're being presented with?

    I will say this for me: once the scans and tests and baselines were done and the chemotherapy was decided, there have been no more surprises and I have felt good and in much more control. The chemotherapy delivery itself has been consistent for my 2 sessions. The education they provided ahead of time has been tailored exactly to my drug regimen. The side effect that I was most concerned about was addressed immediately today. Now, it's a self-discipline game (exercise, diet, following orders) a mental waiting game for the desired "pathologically complete response" that I want prior to surgery. I can handle that.

    I hope your sense of total shock improves with the information and the decisions that will be made soon. I do think I can feel for you a bit based on what I experienced myself since February 9th.

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  • MFPM
    MFPM Member Posts: 69
    edited March 2016

    BKGameGirl, Thank you for sharing and the info which I will check out.  I never like surprises either especially bad ones, though I didn't really expect any of this.  I had the cystic problem probably since I was very young and it wasn't until my 40's that I had to have some aspirated, quite often actually, always biopsied normal.  On the left side, a solid with a marker in place which is okay.  The Dr. at the time said it had to be a hormonal thing and then it all seemed to calm down after a few years.  In July I got the call, abnormal mammo, which as I was reminded, that's not unusual, so back I went but had to wait 2 months for the appt., though I still held my head high with hope.  They did a sono that day too and when the girl kept jumping up with a ruler, then going under my arm, I had a real bad feeling, along with some of the workers talking among themselves.  Then it turned into, needing a biopsy another 2 month wait but been there done it, though thought it's been years since I went through this, yet I felt okay.  The Drs. couldn't even feel it, saying if it is, don't worry due to the size.  November I got the horrible call from a substitute Dr. right before Thanksgiving who wasn't friendly and I couldn't understand her.  She said I knew what I was dealing with and heard the c word, to which I asked, I do or I don't have it.  She confirmed it and then apologized when I told her I didn't know.  I got tons of pre-tests during December, right through my Birthday and the Holidays, trying to be upbeat, then the surgery in January which the surgeon was thrilled with saying how perfect it was, good news, not to worry etc..  He even said just radiation, so that's what was on my mind and then when turning me over to the oncologist who said chemo, I could not believe what I was hearing, in shock.  Much luck to you also and guess this is a good place to share as many don't understand or want to hear it.

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  • HolaSandy
    HolaSandy Member Posts: 85
    edited March 2016

    Good (early) morning to all! Welcome to Marilyn. I'm sorry you have to be here but so glad you reached out. It's a confusing path to navigate but I'm glad you are getting some answers and it sounds like you're on track. Even if it doesn't always feel like it.

    I had my first FEC yesterday and felt pretty good with the exception of a little heartburn. I woke up about an hour and a half ago (2 am my time) and can't get back to sleep! It doesn't look like anyone is getting the same cocktail as me but fun fact: Epirubicin is bright red going in and when you go pee, your urine is the color of orange kool-aid! Looking forward to getting out for a walk today, even if it's super muddy out here AND my mother in law is coming to cut my hair today. I've had a mane down to my ribs for about 7 years so this will for sure be new for me. But, oh well, onward I march!

    Hope all you beauties have a wonderful day with minimal SEs!

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    WannaCruize - thanks for the information and the link to the Instructables. I'm going to try this for my next treatment. So far no real issues with tingling except that one thumbnail, but I know the effects are cumulative and I don't want anything to get worse. I'd rather over-prepare than risk the long term SEs.

    Welcome, MFPM. I'm with ya on the "surprises" - hate-hate-hate them! Four years ago I went from small tumor maybe rads, to larger than we thought let's try 4 TC, to Oops Oncotype score of 42, we need the big guns. I had Adriamycin and while I didn't have any problems at the time, I still worry a little about long-term heart problems. I see a cardiologist every couple of years because I've developed an intermittent atrial flutter. I am generally active, and it's not dangerous and does not interfere with my running or yoga practice.

    I went for my first run since chemo yesterday - and it was FABULOUS! Michigan is experiencing a Surprise Spring right now and the sun was shining, it was warm and beautiful, and my run *sucked*. It's been almost two weeks so there's that - my body kind of "forgot" for the first mile, I was out of breath and had to walk here and there. But it got better, and everything felt "normal" for the first time in a long time. I'm so grateful to have these good days in-between treatments; it makes going back for more easier, than if Ifelt really bad all the time.

    Jonsey, I hear you about working during tx. I'm sorry your first week was so tough. I've been able to, for the most part (half day off at the end of the week), but it's been very, very hard. I'm trying to save my sick days for surgery this summer, so I feel like I HAVE to work. I'm carefully planning my calendar for the next treatments to avoid anything important on the days I know are likely to be really hard, just in case.

    Sending sunshine and gentle hugs to everyone this morning.

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  • Melgirl
    Melgirl Member Posts: 165
    edited March 2016

    HolaSandy the Adriamycin I'm taking is the same way! Red with kool-aid pee! Gotta enjoy the little things!!

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    I always pictured Jim Carey in The Mask when my nurse (all dressed in biohazard gear) came at me with the Adriamycin syringe - comically large, looking like Cherry Koolaid, but not nearly as much fun...

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  • Logang
    Logang Member Posts: 421
    edited March 2016

    I had my first round of AC yesterday. Things went well. The premeds made me drowsy, the Adriamycin did give me pinkish/orange urine (thank goodness they warn you), and I started getting pains through my head towards the end of the Cytoxan infusion. My husband and I went to eat after my treatment and I shouldn't have. I vomited 3 times during the evening. I feel pretty good today. I took compazine this morning and have been able to eat toast and drink coffee.

    Wishing everyone a great weekend! Welcome to all the new members!

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  • EllieSurf
    EllieSurf Member Posts: 8
    edited March 2016

    Loretta,

    Sounds like you're in a supportive treatment setting also. I'll be hoping your next few days go smoothly and looking for your posts. It's day 4 for me, and I am feeling somewhat tired, and will be seeing how I do off the nausea meds. I was urged to keep taking them until today, just in case. A little body ache probably from the neulasta, but nothing significant. My husband of 44 years had a stroke last April, and has had an excellent recovery although he cannot yet drive because of vision problems. (I've been able to arrange rides to my surgery and the chemo, but I myself have been able to drive a short distance these past two days.) But he is of the greatest support and I too am grateful to have such a person there for me. I never thought I'd use a word like "grateful" in a context like this, but there it is.

    Ellie

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  • EllieSurf
    EllieSurf Member Posts: 8
    edited March 2016

    MFPM: I've read all your posts. I'm 75 and was blindsided by a DX of IDC in January after years of negative mammos. Anyway, it looked pretty straightforward at first: Lumpectomy, 1 cm, nodes clear, margins good. Probably radiation only. But with more testing it turned out that it was grade 3, and the Oncotype was 22--a gray area for someone my age. Luckily my oncologist and I had an extensive discussion about the research and the gains, and I opted for 4 rounds of CT, some aromatase inhibitor for sure, and a consult about radiology after the chemo is done. The waiting for the MO consult, getting the portal placed and the actual chemo was not so easy, but this is Day 4 of my first treatment and I am doing much better than I thought I would be. I'll be thinking of you, be wishing you the best, and be reading your posts as you move through this process. I want to hear how you are doing. The waiting is the toughest part.

    Ellie



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  • Suchick
    Suchick Member Posts: 12
    edited March 2016

    I begin a 4 round TC regime 3/16...thrilled I don't need more rounds, but still a little nervous!

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  • Melgirl
    Melgirl Member Posts: 165
    edited March 2016

    Logang I'm sorry you had a bad night. I got extreme nausea the first night but no vomiting. I think for number two I will try to eat a better breakfast and smaller lunch. If compazine stops working have them switch you to zophran.


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  • Jonsey22
    Jonsey22 Member Posts: 100
    edited March 2016

    For my TC sisters, day 5 was better and day 6 is going well so far. There is light at the end of the tunnel. The fog has lifted a bit and I feel like I can do normal things. It was pretty dark for me the first 4 days. I was so afraid it wasn't going to get better any time soon but it did. Thought I would share for those of you wondering.

    Cand

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  • Cin54
    Cin54 Member Posts: 13
    edited March 2016

    I start on 3/14, AC-T. Just had port installed yesterday and very surprised at the amount of soreness.

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    Hi There, Cin54. Sorry you have to join us but welcome and we're here for the support. There are a number of us who have had ports placed. My experience:

    - my port was placed on 2/25/2016 under outpatient general anesthesia. no complications w/procedure itself.

    - I was sore in various areas in the trunk, chest, neck, etc for a good 7-9 days. I had a sore throat from the anesthesia. My neck was quite swollen during this time as it got accustomed to the catheter inside. I even took a plane trip on 2/29 and that was fine - carried briefcase - but was still healing up in the trunk and neck. After that 7-9 days passed, it is like a miracle -- I've been lifting, walking, and feeling absolutely nothing. My range of motion is back, I have been doing push-ups, chest presses... Bottom line: IT GETS MUCH, MUCH BETTER!

    - if you are taking any kind of opiate for pain after port placement, I strongly recommend you take a daily stool softener (get one from your doc today if you did not come home with one) and get on any additional recommendations your MO has made for you to avoid constipation if that is one of your anticipated side effects from chemo. That being said...take the pain meds if you need them. I did and I don't regret it.

    - I felt absolutely ZERO when they accessed my port (2 chemo sessions down, 16 to go), even though I was still sore from the healing taking place in general. So, yes, they will use it this week but don't stress, the thing is a miracle device in my opinion. I was given a lidocaine cream which works perfectly and I do not feel anything at all during access, in the infusion, or when they are all done.

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    Italychick...NOT TIRED OF THE OLD-TIMERS! LOVE the wisdom. The coconut oil has changed my life this week, no joke (my bum is now happy again). And I'm doing a daily banana for magnesium, will definitely be asking more about it from MO as side effects progress. Many of the high fiber foods I'm incorporating have magnesium so I feel I have a winner in the diet area right now.

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  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    Day 2 - I slept well last night and woke up refreshed this morning. No nausea, no headaches, no aches besides my normal ones. Very thankful for all my prayer support partners and new friends from this thread.

    I was HER2 positive so I am taking four meds. In addition to Taxotere & Carboplatin, I am taking two biologicals as well. They both have similar side effects plus some that can cause congestive heart failure. So my cardiologist and MO are monitoring those closely.

    Welcome to all you newbies. Sorry you have to be here. 

    If any of you are in NM let me know. 

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2016

    BKGamegirl, awesome. Coconut oil was one of my magic substances. I did get low on potassium during chemo and had to take some horse pills for about a week to bring my level back to normal. I think some of the leg cramp issues during chemo relate to out of balance electrolytes like potassium and magnesium. I started drinking lots of smart water because it has electrolytes.

    The one thing I didn't do a good job at was protecting my digestive system. If I had it to do over again, I would be taking lots of probiotics, kefir, yogurt, etc. to keep my digestive system in better shape. After rounds 4 and 5, my guts burned like you wouldn't believe, and I was stupid to not be pounding probiotics like kefir. Pepcid A/C helped, but I should have been more proactive

    Somebody posted about nausea, and one of the women on our March 2015 forum got the Sancuso patch when all else failed, so just a thought.

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