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Starting chemo July 2014

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Comments

  • JoeysMommy
    JoeysMommy Member Posts: 64

    Hello, Nigelsmommy, I had the exact same oncotype score of 30 I will begin chemo on July 16th, port will be placed on Saturday July 12th.  I was wondering from all the Mommies of young kids .. how did you tell your children.   So far I have kept this from my son,  he thinks I had an issue with my muscle - My reasoning for this is he just witnessed his grandmother (my Mom) battle lung cancer, having chemo, being hospitalized and passing away on Memorial day.   My boy is 10 he has juvenile diabetes and his father does not actively participate in his daily life.  He sees him once every 6 or 8 weeks for an hour.   I will be telling my son over this weekend but I am so afraid he will think I am going to die.  He already has so much to deal with I am so heartbroken over this.   Initially I was telling him my sister and I were going to shave our heads in memory of our Mother to save him the pain of knowing that his Mom has breast cancer.   Any ideas would be greatly appreciated :o)   

    Thinking of you Mags and hoping you are doing well so far :o)  

  • magdalene51
    magdalene51 Member Posts: 2,062

    Thanks for all the good wishes, so far I think most of my SEs are steroid related, shakiness etc. Normal for me levels of queasies. 

    Coyote, thanks for the list, I've added it to the original post and will try to keep it up to date if y'all will remind me. 

    Mommymel and blownaway, you are in my thoughts today, prayers for an easy infusion, and port installation.

  • jennliza
    jennliza Member Posts: 176

    Hi All, I'm 42....diagnosed with DCIS for my annual mammo on April 12th. I had double mastectomy on 5/20 and my final pathology revealed IDC of .06 cm. So I too am starting Chemo this month. I was supposed to start on June 25, but I delayed it by 3 weeks to do another round of IVF. Although I produced many eggs (18), 10 got fertilized and only 3 made it to day 5....and I dont even know if any of those three are viable. So my boyfriend....oops I mean fiance....he proposed on June 10th....and I decided to do another round....praying that we have atleast 2 hoping for viable embryos when all finished....2nd egg retrieval will be July 9th.

    Anyway, that brings me to a start of July 16th for chemo now....

    Any of you HER2+? My chemo regime is Taxotere, Carboplatin and Herceptin....

    So my Oncologist doesnt recommend Cold Caps....so bought a synthetic wig....held off on the natural hair....but now I am leaning towards cold caps. Any others on here doing/planning to do Cold Caps? It quite expensive for those doing more than 4 rounds...and a lot of work, but still really considering it.

    I have to decide by Mon/Tues to place my order to have them next Fri...decisions decisions. I just really dont want to lose my hair.... I want to get married next summer....and it doesnt sound like much hair will be back in a year. Apparently Herceptin slows the growth....and I have to be on that till this time next year.  I just want to look like me pre-cancer for my wedding....not chemo girl.

    Ok....well off to the dentist to make sure all is done now...before chemo starts....hoping those ice chips work!!!

    -Jennifer

  • magdalene51
    magdalene51 Member Posts: 2,062

    Welcome, scared, to the club no one wants to join. I have added your name to the original post. I'm thinking, if you back up a page or two there was a discussion about cold caps; also there are threads in the chemo section about them.

    Took my first anti nausea med, feeling pretty queasy now.

  • RainDew
    RainDew Member Posts: 228

    hi scared,

    Welcome!

    I am 39 so around your age. Think we have a few in the 'under 45' camp here.

    First - congrats for finding the tumor SO small. That's terrific. Did your MO require the chemo or did you choose it? (Less than 1mm is really little).

    I am doing cold caps - ordered them earlier this week, will have them on Tuesday. No guarantees, but from the women on the cold cap thread (think it's in 'help me get thru tx') seems like most have done fairly well. Happy to swap stories.

    Is anyone taking glucamine? My MO said some people do for neuropathy and find it helpful but not everyone. Curious what others' are doing? Any other recommended supplements?

    Mommymel, Blownaway - let us know how you go.

  • CoyoteNV
    CoyoteNV Member Posts: 286

    Hello to you Scared42.   I am definitely not in the 'under 45' camp and feel really bad that there is a possibility of such a thing!  I understand the aggressive direction of your treatment.  Grade 3 gets your attention at any size!  It is wonderful that it was found so small. 

    RainDew.  My new anti-neuropathy regime includes L-glucamine and B-6. My cold mitts arrived today and are now in the freezer.  Last time I used all sorts of freezer packs on my fingers and toes - it seemed to help.  I did not lose my nails, but did have fine ridges show up later as they grew out.  I didn't take supplements for neuropathy and it didn't seem to create a problem for me...it could be that the ice did enough.

    Mags, I remember the couple days after infusion crude.  Not looking forward to that.  Hang in there girl.

  • nancy2581
    nancy2581 Member Posts: 408

    Hey you guys - I hear so many of you talking about having a port put in.  Nobody said anything like that to me.  Does everybody get a port?

    Nancy

  • jennliza
    jennliza Member Posts: 176

    hi Raindew...sorry my mass was .6cm or 6mm...so chemo is required...but may do less treatments than the standard 6. Someone with 3cm and lymph node involvement would get 6 tx as well...so think it's a bit overkill. Though if I do less will prob do 5 tx..

    And I read L-Glucamine...it's also supposed to help with mouth sores. I want to take it but because I am HER2+ it's not recommended. HER2+ is a over growth of the HER2 protein...and L-Glucamine is a protein...but if I wasn't HER2+ I would definitely take it!

    And Nancy, I'm not gettin a port either...I've been told I have good veins. But I've hear a port is easier. I will see how the first round goes...

  • RainDew
    RainDew Member Posts: 228

    ah, Scared, makes sense! Still you caught it very early which is great.

    Coyote - thanks!! I will look into L-glucamine then. Also had not considered cold mitts...anyone else doing this? For feet too?

    (Btw it totally BLOWS that you have to do this again...I am so sorry!!)

    No port here - nurse felt that my poor left arm could take it. We shall see...

  • magdalene51
    magdalene51 Member Posts: 2,062

    Just checking in; nausea has hit bad this afternoon, I've taken both of the anti nausea meds and still a bit queasy. I did manage to eat lunch and did ok with that, but I'm thinking I'm gonna shut down and hit the sack even though it's only 7:30.

    At least I haven't had to throw up.

    Later

  • CoyoteNV
    CoyoteNV Member Posts: 286


    RainDew: I'm sticking with frozen peas for my feet... read that they "cuddle" around the toes better.  They can be re-frozen and re-used.  I did do toes last time.  The mitts are quite expensive because it takes more than one pair... but seeing my birthday is two days before chemo, I said they would make a lovely birthday present. And thank you.  It does blow - in the extreme. 

    And RainDew & Nancy:  Some chemo is hard on veins.  If you can talk your dr and insurance into the port, it can be far far easier. It is easier if the surgeon can put it in during the original surgery.   You will be having blood draws prior to every infusion. This also can be done via the port.  If in the unfortunate circumstance you have to be given blood because your count is in the toilet, that too can be handled by the port. Then, after all the chemo infusions are completed, you still might get blood drawn regularly if your counts don't go up.  I understand that if you are only going have four infusions, it is assumed that your veins can handle it.  If nurses have a hard time finding a suitable vein for an IV (like on me) it is really a better way to go.  It was so important to me, that I scheduled a separate surgery just to get one put in!  BTW: most of these decisions are yours to make.  If you say "Port", it will almost always go that way.

  • kitkatmo
    kitkatmo Member Posts: 15

    I start July 17 with treatments every 3 weeks.

  • ladytdf
    ladytdf Member Posts: 7

    July 7

  • ladytdf
    ladytdf Member Posts: 7

    Hello to everyone.  I am a little anxious but July 7 is the day I start chemo. I was totally shocked, like everyone else, to receive my diagnose. Now I am so ready to kick cancers butt!!!!

  • CoyoteNV
    CoyoteNV Member Posts: 286

    Hello kitkatmo and ladytdf. As Magdalene51 so aptly put, "Welcome to the club no one wants to join." Sadly, it is a growing group.  Mags started this topic and can add your name to the list at the top tomorrow.  We are here to support each other and find ways to make it a bit easier for all of us. 

    Take care.

  • too_young_momof2
    too_young_momof2 Member Posts: 44

    So yesterday went well... today another story, did my herceptin waited the hour for observation, wasn't really worried as I did Herceptin and Docytaxol (sorry brain not spelling well) 15 mins befor docyraxol put frozen must on all was good hooked up the Docytaxol and within 7 min was in full allergic reaction. Chest went tight and I looked at DH and said something is wrong by the time he took two steps towards nurses I couldn't breathe however they reacted so quickly immediately on benadryl and hydrocortisone  some bad lower back pain but after 30 they hooked me back up and slept for the rest of infusion ... feeling quite weak off to bed I go.



  • Blownaway
    Blownaway Member Posts: 662

    I DID IT!!! and it wasnt so bad. My meds were Docetaxel/Taxotere, Carboplatin/Paraplatin, Trastuzumab/Herceptin (there does not seem to be an abbreviation for my particular cocktail). Everything went without a hitch but it was a very long day (9 am to 9 pm). First was the blood letting, then the port surgery, next saw my Oncologist where I learned that he did not get approval to start the new trial/study that he wanted to put me in - so regular chemo, here we go. Finally, went to the infusion area with no nerves (not a bit scared) because I had my handy dandy pain medication with me to take when the local wore off. BY THE WAY- I was given a mild sedative during the port surgery but it knocked me completely out - don't remember a thing and felt no pain during. Anyhoo, at one point during the infusion, I counted 2 large dark colored bags and about 12-15 clear assorted sized bags hanging from my dance partner (the hanging thingy that you unplug and roll back and forth to the bathroom (which was often because I was warned to drink water before, during and after). I ate like a horse on the same schedule also - pizza for lunch, chicken salad sandwich, baked Lays, fruit, cookie and gingerale for dinner that they brought during the infusion treatment. All tips I learned on this wonderful wesite! Thank you all so much for the encouragement and bolstering my courage. I was given pills to take every 6-8 hours for the first two days after the infusion to prevent nausea and other stronger anti-nausea pills to take should any nausea occurr. So far, no side effects to report. I will say there was one weird effect that I have not read about anywhere so far - try not to laugh loud enough for me to hear you - but here goes. About 2 minutes after the nurse added a small bag to the mix and left the room, I suddenly felt like I had a thousand Texas fire ants in my (nether regions) pants, stinging me. It was very intense stinging but I didnt want to call the nurse because it was a male nurse at that point. Luckily, it only lasted about 2 minutes, when it radiated upwards (but stinging to a much lesser degree) to my abdomen/ribs for about a minute and was gone. OK, I've confided it all now and wiil check back in  with any further details as they occurr. HOPE THIS HELPS ANY NEWBIES SINCE I FEEL LIKE AN OLD HAND NOW. Its the next morning now - still no side effects, had my coffee, banana and now for some raisin toast and egg. Port incision sites feel ok, no pain med needed at this time.

  • Blownaway
    Blownaway Member Posts: 662

    Hi Too Young, that had to be very scary, thank God someone was in the room with you. That never occurred to me - I kept sending my care giver out of the room! Thank you for telling us.

  • Blownaway
    Blownaway Member Posts: 662

    Coyote - where do you find L-Glucamine?

  • CoyoteNV
    CoyoteNV Member Posts: 286

    Good Morning... so glad that yesterday worked out ok for both of you.  Certainly can't say it was an uneventful day!  I will tell you that during my first go around with Chemo, I never had a problem on the first day. As with Mags, it was always a day or two after. 

    I buy most of my pharmy stuff online from Lucky Vitamins.  That was my source for L-Glucamine. 

    Have a good 4th all! 

  • Cinchacha
    Cinchacha Member Posts: 3

    Please add me to the list. Expecting a port placement after mug heart scan and bloodwork next week. Happy 4th of July! Not looking forward to the particular fireworks that chemo will produce!

  • too_young_momof2
    too_young_momof2 Member Posts: 44

    Happy to hear everyone is doing well, I feel great today hope this is smooth sailing from here on in :)



  • CoyoteNV
    CoyoteNV Member Posts: 286

    Cinchacha: We're with you.  I'm sure Mags will add your new names to the list when she gets back on line. 

    Glad to hear things are going well, Too Young.  It gives me hope for next week!

  • magdalene51
    magdalene51 Member Posts: 2,062

    We're getting quite the group here. I've added the new names to our list. You've already been welcomed to the group no one wants to join but we are here to support each other, encourage each other, and lift each other up with loving and empathetic hearts. 

    I will confess it's pretty bad right now, just waves of nausea even with meds. Haven't tried to eat – why didn't I think of bananas? That actually sounds bearable. Oh wait, I had a few bites of melon earlier. DH is going to scramble me an egg – I need some protein. I know I'm not drinking enough water, just never been a water drinker.

    Hopefully blownaway and mom are doing well. This too shall pass.

  • nancy2581
    nancy2581 Member Posts: 408

    So I went to my chemo class yesterday.  No port for me.  They did a nice job of scaring the crap out of me some more though.  The lady was really nice and I know she has to tell you everything, but I walked out of there thinking I don't feel any better than I did going in.

    She talked a lot about infection, fever.  I really didn't even think about all that until the class.  Ugh.

  • kitkatmo
    kitkatmo Member Posts: 15

    I am so grateful to have found this site. Everyone is so supportive and full of information! Starting the 17th, I have to have and Echo and a port placed in the meantime. I have some questions, I know everybody is different, etc. I am an RN...no experience with oncology. I have been curious about how everyone deals with working while taking treatments. I am the house charge, so while I have a lot of patient contact, I don't do a lot of direct patient care. My job is mainly responsibility for keeping staffing assigned adequately, resolving conflict, helping out where I'm needed and generally being responsible for everyone working. Since my diagnosis I have really had a hard time staying focused while at work with all of the emotional stuff creeping into my mind constantly. Now with treatment on the horizon, I'm concerned about exposure to illnesses, memory problems and even working with no hair! It's all so complicated as you all know. Any suggestions or comments are welcome as this is weighing heavily on my mind. I have STD and FMLA available. After my 4 1/2 months of chemo, I will have 6 weeks of radiation.

  • CoyoteNV
    CoyoteNV Member Posts: 286


    Mags, I'm so sorry to hear that you are feeling yucky.  Last time, my Onc Nurse suggested the BRAT diet.  It is generally for digestive upset issues. BRAT = Banana, rice, applesauce & toast.  You can add tea and call it BRATT.  I did find it helpful.  As a matter of fact, when I was a little girl (oh those many years ago) my Mom would give me applesauce and cinnamon toast when I had an upset stomach.  It worked then and it was called MOM.

    Nancy, that's a good point, we do have to be careful of infections.  Our white blood count can really hit rock bottom.  Where we go, what we do and who we see definitely becomes limited.  That's a lot harder for some of you have smaller children - who seem to catch everything that flies by.

  • Blownaway
    Blownaway Member Posts: 662

    Mags - Im right here with you. I started around 9 am - nausea & shooting head pains. Not treating the head for fear of making the stomach worse. Sticking with saltines & gingerale mixed with water wirh lemon to keep the saliva glands working. HOLDING YOUR HAND.

  • magdalene51
    magdalene51 Member Posts: 2,062

    I know, right? You want to treat the SEs without making them worse. And we don't know what's going to make them worse. That's really the problem, we just don't know. I don't have any bananas but I have applesauce and I'm sure there is rice. And toast. Maybe someone will take pity on me. I sure am a pitiful thing right now.

  • mommymel
    mommymel Member Posts: 77

    Hi beautiful ladies 

    My chemo was delayed. I'll start next Thursday 7/8/2014.

    I wish you all the best on the upcoming treatments and hopeing for the best. 

    At this point I'm a little afraid since I feel that my imune sistem is still very fragile. On the last 3 weeks I had an UTI , a pick eye , a bed allergic reaction to sunscreen , my hair is falling a lot and yesterday I notice some sores on my mouth.

    The funny thing is that my chemo didn't even happen yet .... Feeling anxious and nervous for the upcoming treatment.;(

    XO XO