Chemo in July 2015

Bliss58

Melinda531, Glad to hear you're doing well. I'd like more info about taste buds, too. Cottage cheese is the one thing that still tastes correct to me, but you're right, drinks taste funny to me, too. I just bought some Hint flavored waters online because I'm getting tired of just plain old water. Zero sugar or sweetening of any kind or anything artificial, just water and natural flavoring.

alice12

rosesr: thank you for the info

6feetover

Greetings, fellow July chemo-endurers!

Had my first round of AC chemo on July 7th; the 2nd round is scheduled for the 21st. I'm doing dose-dense (bi-weekly) for 2 months, to be followed by weekly Taxol (+ possible Carboplatin) beginning sometime in September. I just joined/started posting here; I'll probably mostly be hanging out in the Triple Negative forums...

I've been pretty cavalier with my hair over the decades, dyeing it black (and various other colors) for years, chopping it off and starting over many times, and most recently using all-natural henna to color it and growing it nearly to my waist. Alas! I knew that I wouldn't be able to handle seeing all that hair start coming out in clumps, so I shaved my head (with my DH's help) about 2 weeks ago. DH shaved his head in solidarity, and we're going to send our hair to this cool company in FL that turns donated hair into real-hair "halos" to be worn under hats/caps for a convincing real-hair look. That said, I've been going around sans headgear most of the time because I just don't give a rat's arse what other people think.Several people have said that they're shocked at how pretty and Sinead-y I look (vs. Uncle Fester-y, heehee!).

I *did* purchase an acceptably natural-looking wig to wear to work; ironically, the fatigue and low white cell counts have thus far prevented me from returning to work (I work at a casino - need I say more?). Oof. I also just treated myself to a silly purple anime/cosplay wig that I fully intend to wear in public, esp. on chemo days. I used to say that I wish I could change my hairstyle/haircolor every day–looks like I got my wish...

alice12

ladies, how many days the side effect (constipation, fatigue) usually last? thanks for the info.

Cheesequake

My first chemo (yesterday) is done! 90 mins of Herceptin, an hour wait, then 90 minutes of Taxotere and 30 mins of Carboplatin. No reactions. I used my Elasto-Gel chemo caps, mitts and slippers throughout, even with multiple nurses telling me it's a waste of time. If it helps at all with nail lifting or neuropathy and if i keep 80% of my hair, great, if not, it was worth a try. Wish they wouldnt take away hope like that. Feeling great so far today, walked outside and took some photos around my neighborhood in the clearing between rainstorms - and keeping very hydrated.

My onc has made no mention at all of Neulasta or Neupogen so I'm hoping not to need them! Taking lots of extra precautions to make sure my husband doesn't have any effects from the TCH in my bodily fluids - sleeping separately for a few days, washing clothes separately, washing down the bathroom with rubbing alcohol after I use it and flushing twice!

Cheesequake

Oh! I also painted my finger and toe nails black as I hear that's supposed to help with nail lifting. I put an iridescent coat over the top that is bluey-greenie-purple by itself, expecting something kind of peacock colored. Over black it looks more greenie-black like the shell of a beetle. Oh well

alice12

cheesequake: I plan to use penguin cold caps during my chemo, but not sure about the mitten and slippers. I am worried if it gets too cold. How was your experience? How long did you wear the mitten and slipper? I am on same regimen with yours. I am not sure if they will start with taxotere or herceptin. Thanks for the feedback.

Cheesequake

alice12, I have four caps, four pairs of mitts and four slippers. I kept them all in my freezer overnight then took them in a cooler with 40 lbs of dry ice to the infusion center (luckily my husband and a dolly made that possible). I changed them out every 45 minutes during Taxotere and Carboplatin, starting 15 mins before Taxotere and going 15 minutes after Carboplatin. Each time I put on a new set, they seemed colder and more painful, but manageable within 10 minutes. I have bad circulation and my hands and feet are naturally cold, so this might make it worse for me than normal people.

When I was done with a set I put them back on the dry ice, which re-froze them. The last change was a re-freeze, and they were the coldest - I actually had a bit of numbness in my pinky that finally went away this morning. I wouldn't recommend re-freezing. All my future infusions will only take two hours total, so my sets of four should time out perfectly.

Having hair provided insulation that made it much more comfortable on my head than on my hands and feet. I used moleskin (with adhesive on the back) on my forehead and over my ears which helped immensely - just be careful not to get hair on the adhesive, you'll rip it out when you take it off!!!

Want2Bcamping

Taking a break from my cleaning and wanted to catch up with everyone here. Hope all are having a great day. Mine are better with the exception of some constipation issues still lingering but other than that doing fine.

JustLikeSamantha

Encouraged by all the information and support I see here. Hoping to find some answers to my dilemma.

Surgery was in June. Right mastectomy with sentinel node biopsy. No cancer found anywhere beyond the original tumor which was just over 4 cm. No post-op pain. Recovery was amazingly uneventful. Finding out that was the easy part.

First chemo was July 8th and all was well until I began the Neupogen injections Friday evening. Awoke Saturday with bone ache and fatique which continued thru Sunday. Monday the side effects lessened. Tuesday they came back with a vengeance accompanied by a fever which sent me to the ER followed by two nights and 3 days in the hospital. Bone/body aches were a solid 9 on a scale of 1 to 10. Fever hovered at 101. My white cell count was way below normal and platelettes weren't much bettter. I had taken four of the five Neupogen doses before going to the hospital. They did not give the the last one as scheduled Tuesday evening but instead gave it the next afternoon. My fever returned within 2 hours. Once we got rid of the fever, for the last time, I was on the mend.

The doctors seem to think this is to be expected and I shouldn't be too concerned. I disagree.

Has anyone out there been successful in warding off the negative side effects of Neupogen? Landing in the hospital once every three weeks is not part of my summer plan.

mdoc524

Hello All - hope everyone hanging in there -side effect free

Ruth - hope you are better now & your se's get to be more manageable!

Melinda, Cheesequake and all - thanks so much for sharing some of your tips - always just so helpful

alice12 - glad you found us - let us know if you would like to be included in our group on the lead post - need the date you are starting chemo and what treatment/chemo drugs you will be getting...

djatsw47 - welcome to you -- good luck next week - what chemo regimen will you be on? AC + Taxool, TC, TCHP etc ??

nicevolve - let us know if you want the day you are starting chemo and which chemo drugs you will be on

adarkadaptedi - welcome - glad you found us and thanks for sharing how you are doing since your first treatment on the 7th - hope your fatigue and wbc's have gotten better...

Also want to know everyone's opinion and can't remember if we have already discussed this .. does anyone have acrylic nails and keeping them? I was planning on trying to keep them - not starting treatment until 7/31 ... curious if anyone else trying to keep their nails - it is the one "vain" thing that I did not want to give up - mainly because when I do not have acrylic on my nails my cuticles split and bleed

Stay Strong Girls - Happy Saturday Night!

Mary

Suzanne50

Hello ladies- I start chemo August 3. I didn't see any August Chemo board so thought I would join in on Jully. I am nervous of course but trying to take this whole thing day by day and not obsess about the "what ifs". I am trying the Penguin caps through the oncology office. They have to be changed 14x over the 6 hour infusion time and are supposed to be highly effective. We shall see. I am buying a wig just in case.

I asked this question on another board but will try it here as well. I have some difference of opinions about radiation. My oncologist didn't think I needed it following chemo. He said with my type of cancer, radiation has shown not be be effective. My BS says that protocol says 1-3 positive nodes (I have 3) = chemo followed by radiation. So I need to get a second opinion. Just curious if anyone else has had a similar experience.

Want2Bcamping

Welcome Suzanne50 - hope you get some answers with a second opinion. I can't offer any about that as I will be doing 33 sessions of radiation after my chemo.

It is hard to not worry about the "what ifs". I try not to but some days are harder than others for me.

powerthruit

JustLikeSamantha - regarding Neupogen, did your docs not tell you to take Claritin in advance? It really works. In my case, I was told to take a Claritin 30 min in advance of giving myself the shot. Second, it's my understanding Neupogen is regularly prescribed in two doses. 150mg per day/shot for 7 days and 300mg per day/shot for 4+ days. I'm not crystal clear on the latter, as I was prescribed the former. I mention this, because if you were prescribed the latter, you would definitely have more more/a lot of bone pain, especially, if you had not taken a Claritin (or Zyrtec) in advance of the shot. Some folks have been instructed to take a Claritin even farther in advance of the shot. Definitely ask about all of this if you haven't yet.

6feetover

Good afternoon, ladies!

Regarding nails: I asked my onco nurse if I could safely polish my nails during chemo; she told me not to do it and to keep all of my nails very short to help prevent catching and lifting. Meh.

6feetover

Mary -

Thank you for the warm welcome!

So sad to see so many folks here...glad we can all compare notes, commiserate, and provide each other with support. This is a surreal nightmare that no one should have to endure.

Batesburg

Hello adarkadapted,

I am less than 1 cm also (or about a cm) in my breast with a palpable lymph node that is positive. I am doing the carbo/taxol and taxol for 12 weeks then AC. My MO said to change up the order- not sure why- I am going to ask when I go in on Tuesday.

Curious- you or anyone else have a palpable lymph node or mostly through sentinel/surgery did you find out? I don't know how many lymph nodes are affected because surgery comes after my chemo.

So good to be on this site together even though it sucks all around to have BC. Somehow there are lessons in all of this to be shared and cared about.

Happy Sunday to everyone!

Janet

P.S. I start neupogen this coming week because my counts did not come up in time on their own....thanks for all the good advice. I suppose we all should basically expect to have low counts- just don't want them too low to have to skip a chemo day.

Batesburg

Also, do most of you have a positive outcome with the neupogen- i.e. counts go up?

Want2Bcamping

I was wondering what everyone's experience has been with subsequent sessions as far as the side effects are? In your experience, are they about the same or worse? Coming up one my 2nd one and didn't know what to expect.

6feetover

Janet:

Hi there!

One of my left axillary nodes was biopsied because the radiologist who did the ultrasound-guided biopsy that found my malignancy could feel a palpable node in my armpit (she described it as "plump") and was suspicious. Unfortunately, her suspicions were confirmed. I haven't had any other nodes biopsied, though, so I don't know how many are affected, either...

I'm getting a Neulasta shot the day after each of my 4 AC chemo infusions, so I can't speak to anything relating to Neupogen. I won't know what my counts are like until Tuesday, when my labs are drawn prior to Infusion #2. Blech.

Batesburg

@adarkadapted

Thanks so much for your reply- I am sure your counts will be GREAT!! That neulasta is good stuff. I think neupogen is similar - might act a bit quicker? (I am having weekly chemo sessions- Carboplatin and taxol week one, week two and three just taxol, then cycle repeats 3 more times, and then AC. I am getting my second carbo/taxol tx this Tuesday. I am calling the AC the "seal and deal" drug....wrap it up and ship it out never to be seen again!!!

I am TN, also, by the way!

I hope your weekend has been grand.

Bliss58

Janet, I can't speak to Neupogen either as I also got Neulesta the day after my treatment, but with it my counts did come back as i was checked at a one week followup. I also don't have a palpable lymph node, but two looked suspicious on the US. Only one was biopsied, which came back positive, and we're assuming the other is as well. I won't have surgery until after chemo, so I don't know either how many are actually affected.

Batesburg

Thanks for your post, Bjsmiller!

Difficult to wait on number of lymph nodes but on the other hand the chemo should knock the cancer outta there. So, ALL good! I have seen where people post how many lymph nodes WERE affected even though the cancer is not there anymore as a result of chemo. Have you seen that, too? Not sure how they figure that out.

Anybody chime in on this?

JillyB

Batesburg - I just used the electric trimmer I use to cut my husbands hair. It's a Wahl brand. The next day he used an electric razor on me because if didn't get too close. I had him shave my head because it was too emotional for me. Then I shaved his head. He went bald with me.You could always go to your hair salon and have them do it.

JillyB

Kdcjjc - I go for my second treatment on the 22nd. I'll post then how the treatment went.

6feetover

Janet:

It's not just my white cell count that concerns me, it's my red count as well–I'm pretty anemic.

Batesburg

I know a fellow BC survivor who had some anemia as well- she got thru just fine- had to have one infusion but other than that she was OK!! I was told chemo hits the WBCs harder than the RBCs- but, of course, if you come into it a little low, may have to have a bit of support along the way.

Rooting for you BIG time adarkadaptedi!!!

NO FEARS- we've GOT this.

art15

My wife is 65, she is having chemo, the bone marrow s suppressed, and the red blood cells are low, (anemia) and they told her if they are below a certain point, she will have a blood transfusion. She gets a Nulasta pod on her arm after 2 infusions, so her WBC are ok, but they said the red blood cell counts are lower and "cumulative" but they monitor closely.

6feetover

Janet:

Thanks for the words of encouragement! My pretty much lifelong anemia's related to the horribly heavy menstrual periods I had throughout my teens/20s/early 30s and the hideous uterine fibroids that started growing in my mid-30s (I'm 47) and essentially cause a monthly hemorrhage; the most conservative solution anyone can seem to come up with are BCPs. I also haven't eaten anything close to a "normal" portion of red meat in decades, so that probably contributes.

There's a strong history of all sorts of cancers, mostly breast-related, on my maternal grandfather's side of the family. However, because my mom had 2 bouts of breast cancer but ended up passing away due to ovarian cancer, and because my biological paternal grandmother passed away from ovarian cancer at 43, all of my former gynos thought it best to keep me on BCPs to try to prevent ovarian cancer (with the worry about the possibly-hereditary breast cancer taking a back seat).

Over the years, several gynos admonished me for not having had a hysterectomy to get rid of the menacing fibroids/potentially-menacing ovaries once and for all–but who has the luxury of taking 2 months off of work for that kind of thing?!

Ahhhh, the irony... *Sigh* At least I've been told that I can look forward to temporary menopause as I get further into my chemo regimen. Whee!

6feetover

art15:

My thoughts go out to you and your wife; I hope she's doing well, in spite of everything! I've been told that I'll have to be transfused if my red counts are too low; guess I'll find out Tuesday! UGH. If they have to transfuse me, then I'm guessing that they won't be able to infuse me. Fabulous. I wonder what happens then..? My onco doc said that she's not overly worried that I'll be too anemic for Infusion #2, but I'm freaking out.