HAVE TO DO CHEMO! NEED ADVICE...PLS

Options
MiraclesHappen
MiraclesHappen Member Posts: 14
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment
  • This letter is from my friend Bernadette on another thread.  I thought this Board might be more appropriate now that she has to do chemo.  Thanks for any help you can give her!
  •  I just got word that I will need chemo.  My oncotype DX test came back in the high probability of recurrence.  I now have a 20% chance of breast ca recurrence within 10 yrs, even with the double mastectomy.  If I had known this, I would have done the double mast and left the reconstruction for later.  Now I feel uncomfortable with the expanders and I'll have to go through all the chemo side effects, too.  I have problems with antibiotics, too, and all other types of drugs.  And I have chronic hives.

I had a bleeder in the left breast after surgery (5 weeks ago) and had to be returned to the ER for evacuation of hematoma the next day.  My hemoglobin went down to 6 (lost 750 mls of blood) and they didn't transfuse me.  Instead, they gave me a cell saver of my own blood and iron infusion, which gave me fever, shaking chills, and diarrhea.  It was horrible.  How can I get chemo if I can't tolerate the treatment for side effects?  I have an appt to see my onco this Friday.  I dont' even want to do chem but I guess I have no choice.

Anyone else here going through chemo and has expanders at the same time?  How long is the chemo for breast cancerr?  Which drugs are taken?  Any help you can offer would be greatly appreciated.

Bernadette

· Share on FacebookShare on Twitter

Comments

  • lisamed123
    lisamed123 Member Posts: 186
    edited August 2008

    Bernadette,

    Chemo is sooo doable.  I just finished July 17.  I did 4 dose dense of A/C and 4 Taxol.  I work full time with a 1.25 hour commute each way and I have two kids, 17 and 5 at the time of chemo.  Other than the day of infusion, I only missed a 1/2 of work due to feeling crappy.  Yes, I would have loved to have stayed home some days, but I truly did not want to waste vacation time on chemo. 

    I have expanders in also.  I had a really long time healing on one side.  I have had three fills and they stopped in early July because I am now doing radiation.  After my skin heals from the radiation, I will starting having the expanders filled more. 

    With the drugs that they have now, chemo is not like it used to be.  I would describe the feeling as the same as early pregnancy.

    I will admit I was pretrified of doing chemo.  Also, once the hair thing is said and done, it is truly not that big of a deal.

    Hope all goes well.

    · Share on FacebookShare on Twitter
  • bmwol
    bmwol Member Posts: 7
    edited August 2008

    Did you need cortisone for nausea while doing chemo?  I have trouble on cortisone.  I also haave chronic hives, back trouble, am in the middle of menopause with hot flashes, etc.  I just feel like I'm falling apart.  I keep hearing that chemo isn't as bad as it used to be.  I sure hope so.  I've been dealing with this since Memorial Day, when I first discovered the lump via my nipple retraction.

    How long is chemo for breast cancer?  Do yu go once a week for 3 months or 6 months?  Then are you finished after all that or do you still need chemo after a hiatus?

    · Share on FacebookShare on Twitter
  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited August 2008

    Hey bmwol,

    Chemo is fine if you see this as all part of a 'stepping stone' to your new life. Even the hair thing is part of it: think chrysalis! It's crappy, and depression creeps in (remember that!). I'm having heaps of 'bone' pain from the taxanes (the second half of my chemo treatment) and I'm so over it, but I just keep thinking..come Sept 26, cancer and I are no longer acquainted!Laughing 

    · Share on FacebookShare on Twitter
  • otter
    otter Member Posts: 6,099
    edited August 2008

    Chemo can be very different for different women, because of their personal health conditions (age, medical history, heart function) and the variations in their tumors (size, aggressiveness, spread to lymph nodes, etc.).

    One of the most common treatment schedules is to get an infusion once every three weeks.  That can go on for 4 infusions, 6 infusions, 8 infusions, etc.  Mine was just 4 infusions, because I had Stage I BC with no node involvement and "intermediate" aggressiveness.

    A more rigorous schedule might be used for a nastier tumor.   "Dose-dense" treatment, for instance, is given every 2 weeks instead of 3 weeks.  Some treatments are given every week, and a few of the chemo drugs are taken orally instead of i.v.

    Depending on the biological features of the tumor, treatment with some chemo drugs might be continued for at least a year (Herceptin, for instance).  Tumors with estrogen receptors are treated with estrogen-blocking drugs for at least 5 years.

    Just because someone had trouble with surgery (a "bleeder", or a reaction to a blood replacement) doesn't mean that same person will have a bad reaction to chemo drugs.  Chemo is difficult, but it is do-able.  There are some women who are able to work throughout chemo, but I think most of us have enough side effects that we would have to take off a day or two (at least) with each treatment cycle.  Some women end up taking a leave of absence during chemo, because they would be exposed to infections on the job if they continued working. 

    So, it's not possible to predict what a person's chemo drugs or schedule will be, or how she will react to the treatments.  That's probably the scariest part about the whole thing.

    otter 

    · Share on FacebookShare on Twitter
  • DebraE
    DebraE Member Posts: 9
    edited August 2008

    Otter,

    Thanks for the great advice.

    Let me introduce myself, I'm Debbie E and a survivor.  I was diagnosed May 20, 2008 with a suspecious lump.  Fine needle aspiration was inconclusive so surgery July 11, 2008 found a 1.2 cm lump that was stage 1, grade 3 breast cancer.  ER, PR + HER2 -.  I went thru ONCOtype DX test, genetic counseling blood work, CT, MUGA and bone scan and survived.  All came back well,  ONCO had an over reoccerrence rate of 17%.

    Now I'm completely freaked out about my first chemo treatment next Friday (Aug. 29).  I get my port put in on Tuesday (Aug. 26th).  I've put together a chemo bag as suggested on this website, I've purchased scarves, hats and skull caps.

    I'd like to hear from any of you on how you handled chemo's side effects.

    Thank you, thank you for being here.

    DebraE

    · Share on FacebookShare on Twitter
  • DebraE
    DebraE Member Posts: 9
    edited August 2008

    Otter,

    Thanks for the great advice.

    Let me introduce myself, I'm Debbie E and a survivor.  I was diagnosed May 20, 2008 with a suspecious lump.  Fine needle aspiration was inconclusive so surgery July 11, 2008 found a 1.2 cm lump that was stage 1, grade 3 breast cancer.  ER, PR + HER2 -.  I went thru ONCOtype DX test, genetic counseling blood work, CT, MUGA and bone scan and survived.  All came back well,  ONCO had an over reoccerrence rate of 17%.

    Now I'm completely freaked out about my first chemo treatment next Friday (Aug. 29).  I get my port put in on Tuesday (Aug. 26th).  I've put together a chemo bag as suggested on this website, I've purchased scarves, hats and skull caps.

    I'd like to hear from any of you on how you handled chemo's side effects.

    Thank you, thank you for being here.

    DebraE

    · Share on FacebookShare on Twitter
  • otter
    otter Member Posts: 6,099
    edited August 2008

    Hmmm....

    A recurrence risk of 17%?  Does that translate to an Oncotype score of 26, by any chance?  That was my score, and my recurrence risk, if I recall correctly.

    It sounds like you are ahead of the game already.  You appear to have handled everything well up to this point, so you will do fine with chemo, too.  No doubt about it.

    Exactly how to handle the SE's of chemo will depend on what they are (of course) and that depends, to some extent, on the type of chemo you're receiving.

    Some chemo drugs tend to cause more nausea and vomiting than others; so women on those "emetogenic" chemo drugs are given very powerful anti-nausea drugs.  Other chemo regimens are less likely to trigger nausea, but might pose a risk of allergic reactions during the infusion.  Women getting those chemo drugs are given steroids (dexamethasone) before, during, and after the infusion.  Many chemo drugs affect the bone marrow and will cause a dramatic decrease in white blood cells, which can increase susceptibility to infections.  The effect on the bone marrow is managed with injections of Neulasta or Neupogen, which stimulate the bone marrow to produce more white blood cells.

    And so it goes.  There is a drug to counter almost every side effect of chemo.  (My oncologist, who has quite a bold sense of humor, told me the only SE they haven't figured out how to counteract is hair loss.)

    In addition to taking lots of things to counteract the SE's of chemo, it's also useful to assemble food that you will enjoy eating during chemo, lots and lots of liquids (beverages, jello, popsicles, etc.), etc.  There is a whole list of advice in a thread pinned to the top of the list on the "Chemotherapy" section of these boards. 

    Millions of women--tens of millions of women--have done this.  Many thousands are doing it right now.  You will be fine.

    otter 

    · Share on FacebookShare on Twitter
  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited August 2008

    Hi Debra!,

    Everybody is different, but there is some 'common ground'. Dehydration is your enemy so drink way more than you think you need. I peed battery acid after one particular cycle because I became dehydrated. Then I got nappy rash Yell. Eat really simple food..as many VERY colourful veges as possible. Mashed potato etc. Go to bed VERY early. Be prepared for sleep deprivation (from the steroids) and fluid retention. (My legs were like stone) These both pass, and when they do WALK MILES! Everything you read says this. It's the last thing you feel like doing, but it is surprisingly beneficial. Have some cold-sore cream in your pack, and some cheap antacid tablets. They are gold. Eat them during the night when you feel woozy. A friend also recommended having those probiotic drinks in the fridge to restore things a bit..good advice I think, especially if you are on taxanes. The taxanes make your bones feel broken, but don't be afraid..have a big bottle of neurofen (simple anti-inflammatory) handy.

    I cut my hair off, which now that I know a few things, is the best thing I did. I could look after my scalp a bit better..simple soap, mild toner and then nivea cream. I've had peach-down all the way through. Hopefully that turns into my old unmanageable mop! The hair on the nethers gets VERY thin, so have some nappy cream in that bag just in case of soreness. 

    I was freaked out before my first go, but you'll get into a routine and know some signs to look out for. Watch out for the doldrums half-way through when it seems to be forever. It's not! 

    · Share on FacebookShare on Twitter
  • tomatojuice
    tomatojuice Member Posts: 382
    edited August 2008

    Have some peppermints on hand. Some chemo drugs cause a mettallic taste in your mouth that can last a few days. For me water tasted different . So I drank mostly fruity type herbal ice teas, sometimes with a little oranje juice in it. I couldn't be without the peppermints, they really helped.Paul neumans organics-they come in a little tin-like altoids were great. I have never tryed the altoids, but they are probablt good too.

    · Share on FacebookShare on Twitter
  • Coltsneck
    Coltsneck Member Posts: 180
    edited August 2008

    Water tasted different to me also (chemo in 2006) and I developed a nasty metallic taste in my mouth.  My onc told me to buy zinc supplements and take one table/capsule a day. It worked wonders - the metallic taste was gone in one day.

    I had problems with odors - the smell of fresh cut grass made me gag; ocean breezes made me nauseous; people smelled awful - not from b.o. but just some weird odor that seemed to surround them.  It was the weirdest thing I ever experienced.  Thankfully it's just a distant memory now, but if I had to do it over again, I would. 

    · Share on FacebookShare on Twitter
  • DebraE
    DebraE Member Posts: 9
    edited August 2008

    Thank you ladies for the support.  Knowing you are out there supporting and praying for us all keeps me going one day at a time.

    I'm going tomorrow to pick up some more things I might need.  I plan to get bottled water, Boost and Carnation Instant Breakfast. As tomatojuice suggested, I'll pick up some herbal teas too. I'm concerned about my weight to begin with.  I'm 5' 6 1/2" about 115 pounds.  I've always been thin.

    I've been a friend of Bill W. (AA) for almost 19 years now.  I use a lot of the slogans I've learned over the years. 

    Just knowing your there and do respond to my postings really helps.

    Thanks again and you all are in my prayers.

    Debra

    · Share on FacebookShare on Twitter
  • DebraE
    DebraE Member Posts: 9
    edited August 2008

    Otter,

    One percentage from the ONCO type DX test was 17%, and I think reoccurence over 10 years was 11%.  My Oncologist did not like the grade 3 result.  I did not do a monthly exam and when I was told there was a lump, I found it that day.  My primary doctor does a complete exam each December and she did not find it then.  My mammogram in May showed the lump and "microcalcifications greater than 10 in number".  Some of those things I'll never forget.

    For now she wants to do 4 treatments 3 weeks apart.  That may change.  I'll know more Monday or Tuesday.

    Thanks again for the support.

    Debra

    · Share on FacebookShare on Twitter
  • cleto
    cleto Member Posts: 2
    edited August 2008

    If it is any comfort to you I have had Chemo going on 2 years in Oct. My breast cancer had went to the bone. I had chemo weekly for over a year and than every three weeks when the other chemo quit working. I have never throwen-up are even experienced nausa. I never lost  my hair until the chemo went to a strong chemo. The stronger chemo I only have to take once a month and it has been easier to tolerate. My red blood counts have gone down more and I have had to have blood tranfusions. Most of chemo is tolerating the fatigue and the decrease in ability  to do what you once did until your blood work goes back up. Everyone experience is different but I do know if you go in looking for the bad you will find the bad.

    · Share on FacebookShare on Twitter
  • cleto
    cleto Member Posts: 2
    edited August 2008

    Never really had any except the low counts and that is equally to fatigue so I tried to find lower activity level to function at.

    · Share on FacebookShare on Twitter
  • DebraE
    DebraE Member Posts: 9
    edited August 2008

    Cleto,

    Thank you for posting more words of encouragement.  It's comforting to know there is such a strong support group around the world no matter who we are.  My fear right now is the fear of the unknown, this being the first treatment and not knowing what to expect.  My friends say not to fear the unknown, but to embrace it.  Easier said than done.  But I know God does not give us more than we can handle.

    Thanks for sharing your experience, strength and hope.

    DebraE

    · Share on FacebookShare on Twitter

Categories