Starting chemo March 2013

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  • AmyJBR
    AmyJBR Member Posts: 2
    edited April 2013

    Starynight, I have also had tremendous headaches.  Praying for yours to get better. 

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  • curly123
    curly123 Member Posts: 127
    edited April 2013

    Omg...I have had the most awful headache for the last 2 days.  I just called my MO and she said it could be cause for concern and I may want to go to emerg to get checked out.

    Has anyone taken anything to help with headaches?  Extra strength tylenol is not helping.

    curly

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  • alcb70
    alcb70 Member Posts: 166
    edited April 2013

    I had awful headaches...they were worse if I didn't/couldn't drink much. My MO's office will give fluids if you ask, all I have to do is call. Maybe they could do this for you or arrange w/ the ER? Hope you feel beter!

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  • EmilysMom
    EmilysMom Member Posts: 65
    edited April 2013

    Curly, which tx are u on right now? When I had headaches, only Motrin 800 would knock the out. Tylenol wouldn't touch them.

    Four Advil is these means Motrin 800....



    Also alcb70. Is right about fluids.... Wondering which tx because some allow fluids more easily than others. With AC, I could barely drink 20 ounces a day. With taxol, I can drink unlimited no issues. Getting a Bangor saline sometimes helped with that.

    Having periodic headaches with taxol.,but its not dose dense... AC was.



    Hope they have already gone away or they will very soon and u can start feeling better!

    Never hesitate to call you MO if u have issues like that. They are there for you.... They SHOULD be!



    Rest easy,

    C

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  • sandersmomma
    sandersmomma Member Posts: 23
    edited April 2013

    The hair loss is starting. I am only at day 12 since my first treatment. Yesterday I noticed I don't have to shave under my arms. Today I'm losing the hair down below. Tomorrow I think I will buzz my head.

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  • EmilysMom
    EmilysMom Member Posts: 65
    edited April 2013

    sanders momma....

    Hang in there.... Yep, that was how it went for me. Be prepared for the shaving to be more emotional than u might expect. I thought it would be ok, but I was really struggling with it. Glad my daughter ain't home when I did it. Everyone handles it in their own way...



    Keep up the fight... You have it in you. Assuming you are on AC.

    Hang on and soon you'll be on an easier regimen.

    Hope and peace to you.

    C, Emily's mom

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  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited April 2013

    I thought losing my hair would be more emotional than it was, but I ended up being ok with it.

    My third A/C is still somewhat kicking my butt. I have my last one next Thursday, so I hope that the following week isn't awful for me. I had been thinking that Taxol would be better, but after reading some things about its side effects I am starting to worry. Oh well, no sense worrying until I see how I react I guess.

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  • EmilysMom
    EmilysMom Member Posts: 65
    edited April 2013

    Dear liffeybloomer....

    My AC was horrendous.... And I will tell I that my third onewasworset of all,although I thought umber fourwouldbeworst. Hang in there girl... You are almost done with it!!!!

    I alsoworriedaouttaxol' biting havemysecondtreatment tomorrow and all icansay is that it is not a piece of cake, but it isawalk inthepark compared to AC.... Anyone who hasdoneothhastoldmethis.



    Sorry formy wordsjojnedtogether... iPad has its own mind.



    Hang inthere... You are almost there!!!!!!!

    Taxol WILL be easier thanAC.



    Peace, c

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  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited April 2013

    Thanks Emilysmom, I really appreciate your being here giving support through all of this. It helps to have someone here who has been through this.

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  • rivercottagegal
    rivercottagegal Member Posts: 38
    edited April 2013

    Port tomorrow and second TCH Wednesday. Scalp tingling and lots of fly aways on top when I brush. Husband in the wings with clippers...he's a little TOO gleeful if you ask me! LOL. He's been practically bald for twenty years and just wants company I think...he's really sweet and supportive! Saw kids and grandkids yesterday...text them this morning for fair warning about my hair so they could prepare the little ones.



    Read up on port placement last night...didn't realize there were two incisions involved. Not sure I'm excited about that.



    Insurance company being a pain about how many anti nausea pills I can have in a month. Have to have doctor fax them a form so I can get more than 21 pills in a month...I took 17 last time and treatments are three weeks apart. Have no doubt I'll get them...but really...you'd think they were some major narcotic...dummies!



    Hoping all our cocktails this week go well!!!

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  • sandersmomma
    sandersmomma Member Posts: 23
    edited April 2013

    I decided to take my drs advice and shave my head. I had a little fun with it. I declared yesterday Rock a Mohawk day and shaved my head into a Mohawk. I put some gel in my 6 year olds hair and he wore a faux hawk. It was pretty fun. This morning I shaved the rest. Can't hide the gray when all you have is stubble! I didn't realize how much I had. Sitting at the clinic waiting for AC #2. I am determined to keep this train moving. July 1 should be my last treatment. I want to do everything I can to make that happen.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    Hi Gang, Wishing everyone a decent week out there! As for the headaches, the more water I drank, the less headaches and aches and pains I had. It is a pain from going to the bathroom ALL the time and having to get up in the night a lot - but it is worth it. It turned out to be the number one factor on how I felt. I also found out that any sugar or alcohol gave me a bad headache. My body couldn't handle the blood sugar challenges.

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  • EmilysMom
    EmilysMom Member Posts: 65
    edited April 2013

    Rivercottagegal: ask our MO about SANCUSO anti nausea patch or related ones... Then they can't squabble about pill count, it's all about the number of weeks in a month. It was the best nausea issue change I made... Mine was not made for insurance purposes, but I imagine it might solve our problem, plus the patch has been SOOOO mice more effective for me. Good luck with that!



    Mariasnow.... So glad the water worked out for you! Hooray!



    Sanders momma... What a way to go for involving your son... I thought about trying that but it ends p that neither myself or my daughter could handle it. Funny thing... For me, at least... It took me a long while to figure out why I was so flipping freaked out about losing my hair. Ends up that it was just the reality setting in of looking like a cancer patient! Duh to me.

    ;)

    Some folks do ok sharing that experience with their kids,,.. I ended up crying and my daughter couldn't and still won't look at me without a hat on... Each time she visits me, she reminds me not to take my hat off. A lot of our talk is silly stuff about getting hats and having her help me pick some out, plus her wearing some of the ones she liked. She just can't stand the thought of seeing me bald. That's ok. She has to deal with enough. I certainly won't push it on her!



    Sitting in in the infusion room right now, doing week 2 of 12 weekly taxols. Supposed to have someone come with me because my friend who usually attends with me was on spring break,,,l so I asked a guy I know. I thought I made it clear that I wanted him t stay and HANG OUT during chemo..... Apparently, he didn't understand...

    He dropped me off and is picking me up. Good thing it is not the first time, or it the AC treatments,,,, I would have freaked out being alone during those....

    It i am doing ok being here now, hoping to go home in s few hours and crash for a while under warm blankets. It is chilly and rainy here in Grand Rapids.l. But spring is coming soon,,, I hope.



    Peace and minimal side effects to all!!!!!

    Have as great of a day as possible!

    Colleen, aka: emilysMom

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  • rivercottagegal
    rivercottagegal Member Posts: 38
    edited April 2013

    EmilysMom...THANKS for patch info...will discuss at MO appointment tomorrow! Hope your weather turns sunny! Hang in there!

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  • curly123
    curly123 Member Posts: 127
    edited April 2013

    Alcb & EmilysMom - thanks for the notes.  Would you believe...it dawned on me after 36 hours of excruciating headache, that perhaps the health food binge was the culprit, as I had knocked out caffeine and most sugar.  Well, I downed a burger, mashed potatoes and had a regular tea, and within an hour, the headache was gone.  i couldn't believe the difference.  So, I guess this means junk food is in still!  I am not going through that again if I can help it. 

    Of course, Murphy's law - felt great after burger, then that night, excruciating bone pain.   A million times worse than child birth.  At one point i thought I was heading to emerg.  Finally, Tylenol kicked in and gave me relief.  Brutal.  Luckily only a day of that.

    Now I've noticed some on and off numbness in my fingers and toes, which scares me.  I didn't think neuropathy set in this quickly and not on the FEC part of my treatment.

    As for water, I agree - I have been drinking lots.  I have also started juicing and making veggie/fruit smoothies.  Trying to improve the diet.  Been doing a lot of research and there is definitely a huge benefit to increasing the veg/fruit intake.  I am so pleased to see my kids loving the new and improved diet - so much so that they are even eating a ton of veggies they claim they hate, because they are totally camouflaged!

    xo

    curly

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  • raehyg
    raehyg Member Posts: 85
    edited April 2013

    I was fine shaving my head... I was more grossed out cleaning out the tub. I had already cut my hair short but I still had a lot and I couldn't stop it. Shaving it was the best thing I could do! The lady at the hair salon gave me a hard time at first.....that was getting me emotional! I told her I wanted a zero and that was it. She wanted to leave an inch. I told her its coming out I need the zero. Finally she complied! Thank goodness! Its easier with the little stubbles coming out.

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  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited April 2013

    What I find odd now is that I still have some stubble after shaving my head. Wouldn't chemo have made even the stubble fall out?

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  • rivercottagegal
    rivercottagegal Member Posts: 38
    edited April 2013

    Very glad to report that port placement today was easy breezy! They left needle attached so I could have labs done...OMG sooooo nice to not get stuck! Took some Tylenol for jugular puncture but other than that A-OK. Chemo #2 tomorrow...hoping for a few good days before SE's hit Sunday afternoon. Probably shaving head this weekend...LOTS of wispys in my hairbrush. Luck to all!!

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  • Starynights
    Starynights Member Posts: 85
    edited April 2013

    Been out of pocket for a while...the only thing that helps my headaches is Advil. But was told I cant take it everyday. Doc said if I can get relief from the headache it shouldnt be anything other than SEs....great. Only two more treatments to go. Next one is the 19th. So guess Im on the up side?

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  • Starynights
    Starynights Member Posts: 85
    edited April 2013

    Liffeybloom what are we twins??? Hubs shaved mine slick bald with a razor as I couldnt stand the stubble from buzzing...now its back..the stubble. Is is possible its growing? Hubs bless his heart rubs my baldness during the night. The other night he said "why is your head stubbly"? I shaved it smooth. Brows and lashes and "down south" lol thining. So why would it be growing on my head?

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  • rivercottagegal
    rivercottagegal Member Posts: 38
    edited April 2013

    Rough start to chemo yesterday...MO forgot to place orders and it took two hours to track her down and get drugs made...then I reminded them as they were FINALLY starting pumps about the Neulasta shot I was supposed to receive before I left...and they had to track her down again. I had just seen her the day before so not sure what happened. You can be sure I'll be reminding her each time from now on. My blood pressure was out of sight from worrying I was going to be off schedule. The clock is ticking as I'm trying to get through all this so I can salvage some of our northern summer escape from Texas heat! Usually gone June 1 through mid October. HOPING to get six weeks of R&R after chemo/radiation!



    Question...if any of you gals are from Rochester/Syracuse/Ogdensburg/Watertown NY area and have a treatment center you would recommend I'd be interested in the name of facility and MO. I'll need to continue Herceptin while up north and would appreciate some feedback. THANKS!

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  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited April 2013

    Stary, Hmmm that makes me think that maybe I'll just put up with my stubble. I never shaved it down to total baldness because I assumed the stubble would fall out on its own. I don't think my eyebrows and eyelashes are thinning, but I have heard that Taxol can do that, so we'll see.

    Rivercottage - Wow, that sounds like an awful experience. I had to wait an hour once for my bloodwork to come back, but that is the only slight glitch I've had. I don't know of any treatment centers up there but since my daughter is a Syracuse graduate I thought I'd take this opportunity to say: Go Orange!Laughing

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  • raehyg
    raehyg Member Posts: 85
    edited April 2013

    my head is stubbly too....eyebrows I think are thinning...the down south was the first to go....My leg hairs seem to be growing but underarms aren't. I do find it funny that when I was losing the stubble the hair that goes first on your head is where men start balding. I though bald men had smooth heads....even the bald areas feel stubbly. I don't know its weird

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  • raehyg
    raehyg Member Posts: 85
    edited April 2013

    River,

     Sorry you had such a rough time! It is stressful enough to go through but that was added. Are they giving you the Neulasta the same day? I thought its supposed to be 24 hrs after. I live in Suffolk County so I don't know of any place but maybe you can call the insurance company , maybe google it, even google local oncologist offices, actually the American Cancer Society may have resources catalogued and maybe they can refer you. Good luck

    Rachel

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  • dimples68
    dimples68 Member Posts: 46
    edited April 2013

    Third dose dense chemo was yesterday. Going for my shot today. Felt tired last night but not too bad. Almost done!!!!!! Next and last AC on April 23rd!!!!

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  • jbdayton
    jbdayton Member Posts: 700
    edited April 2013

    Well I am 1 week past the second of 6 txs.  SE's were a little better this time but still having trouble with mouth irritation, cracked tongue and sore throat.  I sure would like to taste again.  The bone pain with the Neulasta was much better added more days to the Claritin and only took Advil for 2 nights to take the edge off.  Other than that I feel great. 

    Had my blood run today and the WBC was way above the high limits but we cannot find any infections.  They are assuming it is due to the sore throat.  We will see what next week brings.

    I am getting used to the stubble but I guess I am too vain and I only go out with my wig.

    On a good note my tumor is starting to shrink fast. I love the idea that everything seems to be working as planned.  It makes this treatment a little more bearable.

    Glad everyone seems to be handling their SE's without too much trouble. The headaches sound horrible haven't had that problem.  I do drink tons of water though. 

    I am on three week cycles I don't know how you guys are doing every two weeks. 

    Most of you have already done your surgery but mine is after chemo.   I still have lots of decisions to make and I am not looking forward to it.  I won't even be discussing this until chemo is complete.  Then I will know how much tumor, if any, is left and if we were able to get it away from the chest wall so we can get clean margins.

    I hope everyone gets a good sleep and my prayers are with everyone.

    Sweet dreams

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  • washingtonwoman
    washingtonwoman Member Posts: 19
    edited April 2013

    Jbdayton, so agree with you on the surgery part! I have so many chemo appts left that I don't even ask questions about the surgery yet. I know I'm suppose to have radiation too but don't ask about it either ha ha. Managing the weekly chemo appts that are 4 hrs away seems to consume a lot of my life. Take Care, Candace

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  • TXSockMonkey
    TXSockMonkey Member Posts: 42
    edited April 2013

    Hey JBDayton,

    We have similar diagnoses. I just finished my 4th AC dose dense. My tumor went from a peach pit to 1 cm x .5 cm. It was cool to feel it getting smaller. Mine flattened like a pancake! I'm hoping this last treatment disintegrates it. They decided to do surgery after the AC to see if I even need to do the Taxol I was supposed to start in two weeks. I'm hoping no. Lol. I hope you get the same results as me. My surgery is scheduled for May 22. I'm ready! Good luck. Neo chemo is pretty awesome.

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  • felka11
    felka11 Member Posts: 5
    edited April 2013

    Hi,

    I want to join this group; thank you for making it.   I was diagnosed 12/20/12 (ER/PR-, her2neu, grade 3) and had surgery (lumpectomy and symmetry reduction) mid-February.  Stage one, clear margins and lymph nodes clear.  

    I started an ACTH regimen 23 days ago- first AC on March 21, second one last week. I have two more ACs to go, then 12 TH, then Hercepton to complete the year I assume in May/June 2014.

    I've had a heck of a time with the chemo.  The first round was hell - nausea, vomiting, headache like I'd never had, leg weakness, leg pain, two trips to urgent care, and my doctor basically told me none of it was "medical" except the headache.  And the treatment center/pharmacist put different drugs in my arm than my doctor ordered and no one noticed until I dragged myself in there a week later.

    So I switched doctors, switched treatment centers, changed the medications (from Zofran to Aloxi, dropped home Zofran and Reglan for Phenergan, still take Lorazepam and Dexamethazone but added a tapered tail approach to the Dex) and round two was NIGHT and DAY better.  Thank goodness.  I meet my new doctor on Monday actually; I am optimistic.

    I threw a clot when my mediport was put in, adding to general complications and misery.  But that's improving too - no more self injecting Lovenox shots for now.  I test my Coumadin/Warfarin levels next week so we'll see how I'm doing.

    I am experiencing all body swelling a couple of days after I stop taking the steroids (dexamethazone)...say Day 6 or 7.  The first time it happened I got checked out for a heart attack at urgent care (no heart attack) and they sent me home with Lasics (diuretic pill), which did the trick and also with a warning that if this happened regularly as a side effect it would impact my heart function.  Is anyone else having this side effect?  It basically feels like you've gained five pounds in a couple of days - tight pants, etc?

    Anyways, I just wanted to say hello, introduce myself...and be in this group!

    Sincerely,

    Beth

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  • felka11
    felka11 Member Posts: 5
    edited April 2013

    My hair started falling out rapidly a day or two ago.  I got a cute super short cut last week, but this morning (Day 22) I shaved it (electric with a guard) because it was still too much mess (and a bummer) falling out everywhere - but really also because my hair/head/scalp hurts when it rests on a pillow so I've been losing a lot of sleep and I thought this might help.  It still hurts though...does anyone have advice for this scalp pain as the hair falls out?  

    Grabbing some Tylenol now (can't take Motrin 'cause I'm on blood thinners 'cause my port gave me a bloodclot, awesome).  ;-)

    I'm still glad I got the cute short cut as it gives me something to look forward to.

    Beth

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