Starting Chemo March 2015

pboi

Thanks for the warm welcome everyone!

For those on weekly taxol, I was also very sleepy infusion day from the IV Benadryl.  I didn't mind the nap I got in from the Benadryl, but I suffered that night from the combo of the IV Benadryl and IV steroids making me unable to sleep much of the night.  After Taxol #3, they allowed me to skip the IV Benadryl and take Zyrtec at home the morning of infusion.  I was able to sleep better at night without the Benadryl.  For me the side effects of the taxol, were definitely cumulative...the fatigue, heartburn, and muscle/joint pain...#12 completed today, bracing myself for the worst this weekend, hoping for the best. 

Mysunshine- I too am finding it a chore to eat.  I'm lucky my taste buds seem to be fine, I just have no appetite or interest to eat.  I wish I had this problem pre-BC, be nice to drop a few pounds, but I have a pretty thin frame now and probably not good to be losing weight...sigh.

Katy - Tutti is so cute, thanks for sharing the pics! 

PB

so-she-did

I've been lurking instead of posting lately because I have been in such a funk, but what you all have been posting has helped me tremendously. Being PFC hasn't been all it is cracked up to be and it has been refreshing to see that, as Sloth put it so eloquently, being mirrored here. Like TerryMarie, I have no stamina whatsoever. I take a walk at a snail's pace for 20 minutes and you'd think I'd just run a marathon. My legs feel like I've just done 1000 squats if I forgot something upstairs and have to go back up. It has been really discouraging since I am trying so hard to get rid of some of this weight I've gained and I can't even handle exercising for any decent amount of time. SC_Coqui, don't feel bad about 15 lbs. I've gained 20 pounds between the emotional eating, water retention, and an undependable thyroid (Hashimoto's disease). I had a blood draw yesterday for my thyroid levels so I'll be interested to see how the results come back. I haven't had my levels checked since being diagnosed and starting meds back in December. Was it you, PB, that said you have thyroid cancer, too? I have nodules that need to be biopsied but I can't seem to get in to see an endocrinologist here. The waiting list is huge! I'm going to ask my BS if he can do the FNB when I see him next. I want it done while my insurance is paying out at 100%.

SpecialK - Thank you! All of the information you have provided has been wonderful but it was the reminder that it takes about 6 weeks to start feeling like yourself again that I have really held onto while trying to come out of having the PFC blues.

Molly - thanks for setting up the group FB. I just signed up .

Katy and SpecialK - the discussion about HT has been very interesting. I am 100% ER and PR + so I'm really relying on Tamoxifen to do its job. Does anyone know how having an oopherectomy would play into all of this? Is there an advantage to having it done in terms of BC recurrence?

On the hair watch front - I've got nothing. Just the same shiny head with a bit of fuzz I have had all along. I can hardly wait to have something going on up there.

Welcome PB!

Katy - I'm so glad that Tutti and Jack are getting along so well and that they are keeping you entertained.

Theresa - Every time I go out to get exercise I think of you. It is awesome that the ejection (I really want to remember the next word that goes here but I think chemo has left me brain damaged) came out even better than expected!

SpecialK

sloth - I would actually wait a bit on the tumor markers, and also ask if any were done before you started chemo as a baseline.  The reasoning is this - many MO don't do these tests, some not ever, because they are very easily influenced by inflammation.  After chemo pretty much everything is inflamed so the test can really be skewed.  I had a normal CA 27/29 (for a cancer patient) but the one done right after chemo was three times high normal!  MO freaked!  I freaked!  It gradually came down but it took a couple of months.  If you see your MO at three month intervals maybe do tumor markers just before the first 3 month appt?  I usually ask the MO to order blood tests so they are done before I see him for the appt so then the results are available for discussion.

sunshine - your ER% does not measure estrogen, circulating estrogen, estrogen you are generating - only the number of  receptors that are potentially fueled.  I had a hyst/ooph nine years prior to diagnosis - I had little circulating estrogen, but was 96% ER+. 

The reference to jelly legs may also be due to low hemoglobin - this is what oxygenates your muscles.  Because the RBC are affected by chemotherapeutic agents, in turn the Hgb drops.  This is the number that blood transfusions are predicated on - symptoms of low Hgb are shortness of breath - particularly on exertion, lethargy, dizziness, confusion, rapid heartbeat, etc.  Most of us experience a low Hgb but don't slip to less than 8 - the magic number for transfusion.  I will say that it took six months for my lab numbers to normalize, and occasionally my WBC is still low.  Some people end up with slightly damaged bone marrow from either chemo, or a refractory reaction to Neulasta or Neupogen - or non-specific marrow injury - that gives them chronically lower counts.

PFC = post final chemo, but that F can mean anything you want it to!

so-she-did - read this info about the SOFT trial - it is comparing ooph or ovarian suppression + AI drug to Tamoxifen for premenopausal women.   If you search "SOFT trial" here on the discussion boards you will see other members who have done, or are doing this.

http://www.ascopost.com/ViewNews.aspx?nid=20664

 

DavisD

I've been laying low again. Had round 5 on Tues, Neulasta and appointment with Opthomologist on Wed and feeling nauseous and weak since. The eye tearing turned out to be a side effect of the Taxotere, Opth said he sees this all the time. Steroid drops didn't help so Wed he did a procedure in the office that involved first numbing under the eye with very sharp needle, then dilating the ducts, and then trying to flush them with a little wire. Right side was completely scarred over but he was able to "nick the sphincter" which should allow for better drainage. The whole thing was painful and pretty scary so if you're having severe tearing and you're on Taxotere don't let it go. Apparently untreated, it could be permanent.

I'm sorry I haven't offered any feedback. I've been so nauseous since yesterday. Went to bed at 4pm and didn't get up until this am. Only one more to go!

I hope Katy and all that were at the spa this week are doing ok!

Hugs to you all!

Trvler

Diane: Don't be sorry. I am sorry you have to go through that all. I am glad you checked in and let us know what was going on.

I have a question for you ladies. My MO told me that it is unusual to get a complete path response from chemo for ER+. Was anyone else told this?

DavisD

Thanks Allison, for the support. I haven't asked the path question  but I did ask about getting a PET scan when I'm done. He said fine if insurance will approve.

I forgot to mention my positives for today-

My son sent me the sweetest text thanking me for teaching him about compassion and understanding...felt so nice

My daughter has been here for 5 days and it feels good to see her happy and healthy.

I am so blessed.

Trvler

Thanks for posting your positives. I admit I have been having trouble finding many lately. My kids are out of school and the fighting just continues. But we have been trying to get my older daughter to be quiet when she gets up way early because she wakes her sister up way to early. We have reminded her 1000x but she does it anyway. Last night I told her if she did it today, I would take away her iPad for good. Guess what? She finally was quiet and my other daughter slept in finally, which I am guessing she needed after being awakened so early for school every day and by her sister on weekends.

Other positives: So far I seem to be handling TAxol pretty well after 3. I know it can get worse. I actually feel a bit guilty when I read what you guys are going through. I wish anyone could figure out why some tolerate things better than others. I was down with the exercise but seeing what Theresa has been going lately makes me rethink it.

Italychick

Trvler, for what it is worth, my MO told me the exercise has probably helped me and she has placed no restrictions on me. And I am still riding my bike.

Jackbirdie

Maryellen- HAPPY 50th BIRYHDAY!!!!!

Cheering you on today and know you will have MANY MORE!!!!!

🎉🎉🎉💞🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉

Jackbirdie

here is what I am thankful for today:

1) no rats in traps this morning ( or anywhere else)

2) although blood work is shitty (see below) I am a couple of points away from any talk of transfusion. Phew! Gonna work on healing today.

Love you all

Italychick

Katy, for what it is worth, my husband put me on shark liver oil. I look at what he does for me sometimes with skepticism, but he doubled my white blood count before I even started chemo, and my numbers have held strong all through the process.

Now if I could just get the damn foot and hand neuropathy under control. I added b6 and alpha lipoic acid at my MOs suggestion, so fingers crossed it helps. My husband also rubs my feet and lower legs down before bed each night so I can sleep, he is the best!

ThePrincess

So - I just met w/my MO about starting Taxol - she is an active research dr and is doing a clinical right now on cryotherapy during taxol to prevent neuropathy - she said the results so far are AMAZING at the difference it makes, FYI for anyone wondering.

Jackbirdie

T- very interesting about shark liver oil. I'll look it up.. My WBC and baby whites have always bounced back pretty quickly, but this is the lowest of the low.

I have a lot of neuropathy too. I have been using magnesium oil plus mm in coconut oil. ALL OVER.

HAH!

More questions for my powwow next Thursday. Though it's now so late in the game it feels a bit like rearranging the deck chairs on the Titanic.

SueH58

is the NE# the same as the ANC???

Jackbirdie

Sue- I'm not absolutely sure, but they are not exactly the same. They convey similar information in different ways.

ANC is an "absolute" count, as in total number of cells.

The NE number, I believe, is a % , expressed as the number of NE/total wbc?

So you would expect an ANC number to be big, like 500, 1,000 or so, whereas NE# is a small number, usually under 5 or so. Does that make sense?

Sometimes labs don't put the ANC number on the report. You can look up on line and figure it out pretty easily. I don't see ANC on mine. The reference ranges are also useful to understand when you're in trouble. Or not.

avmom

Hi,all. Just checking in this windy Friday afternoon.

I had my LAST chemotherapy treatment on Tuesday (dose dense Taxol), so now I'm looking forward to recovery. I can hardly wait, because I'm having lots of SEs. Lots of diarrhea, with bone pain, fatigue and neuropathy. I'm pretty wiped out today, but I'm almost giddy with optimism! This will pass (at least most of it will- I do worry about the neuropathy. I don't have a good sense of where my feet are, and my balance is poor. I'm using a walking stick on stairs, to keep from lurching wildly from side to side). My hemoglobin is very low right now (not quite low enough to need a transfusion, but close), so I'm pretty short of breath with any exertion.

That said, I'm here, I'mworking on it, and I'm determined to get through this. I can hardly wait until I can start going for walks again. Until then, my exercise bike will have to do.

Best wishes to all for a healing weekend.

KBeee

For neu# or ANC, 500=0.5, 1,000=1.0, etc. It can be expressed a variety of ways. Under 2.0 (2,000) is "low" but they will usually do chemo if it is above 1.5 (1,500). If it is below 0.5 and you have a fever, it's a ticket to be admitted for a few days. I hope your counts come up soon, Katy.

Molly, I put a "join" in to the Facebook group too. I can PM you my name if needed.

DavisD

Happy Birthday Maryellen! I hope you're doing something fun or at least pampering yourself on your special day! I feel like every day is special now.

Trvler

ARe we 100% sure this FB group is private? I absolutely don't want my FB to know I am on chemo.

Italychick

Molly, I sent a friend request from my husband, Roger Olmstead to test. You can decline it.

From what I see, if they do a search, other people can see the group and the members, but not the posts. Is there a way to not show the members?

pboi

Amy, my PET scan picked up a thyroid nodule, and after the biopsy I was diagnosed with papillary thyroid cancer.  I'm having a thyroidectomy at the end of the month before rads.  Another primary cancer for me, really?!?!  But I'm thankful it was caught early and it seems to be quite treatable.  I asked if there was a connection between my thyroid and breast cancer, and they told me no, but after reading around it does seem a number of women have had breast cancer and thyroid cancer or thyroid issues, so maybe?

I am pre-menopausal and had genetic testing done.  I was found to have some kind of variant in my BRIP gene, which could pre-dispose me to breast and/or ovarian cancer.  I'm considering having an oophorectomy and probably an AI (or maybe Tamoxifen) for hormonal therapy.  Anyone else considering these options?  It's such a hard decision!

On the hair front, I was happy to see some wiry strands of hair growth along the back and sides of my head, when I started weekly Taxol.  It's been growing little by little every since, unfortunately around Taxol 10-12 or so, I seem to have lost some of that hair!  Sigh...and I was getting excited too...two steps forward, one step back?

Trvler, I have 3 kids (9,9,6) home for the summer too.  I feel for you...their fighting is driving me crazy and with this fatigue its a struggle to find things to keep them occupied!

Avmom, congrats on your last chemo!!! I had my last chemo on Thursday.  I wish some of your giddy optimism would rub off on me!  I'm actually feeling more anxious and worried since chemo is now over.  Hoping the side effects dissipate quickly, but do see that everyone says it will take a few weeks...trying to be patient!

PB

Italychick

I wonder if we should name the group something without Chemo in the name?

Jackbirdie

Avmom and PB- CONGRATULATIONS!!!! PB, I'm sure you'll gradually start to feel more festive. Hopefully, real soon.

🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉

Karen, thanks for the explanation on the ANC.

I see the point about the FB privacy. If you all decide to rename, how about TheTraveling Bracelet?

I know not everyone has chosen to be involved, but we know what it means and wouldn't be obvious to anyone else... Just a thought.

I am feeling a bit better today, working in hydrating and resting, never knew resting could be such WORK!

Hah!

molly1976

I changed it to Secret, rather than just Closed. I don't think anybody will be able to see it now. I just checked a friend's page who I know is in some secret groups and you can't see them on her profile.

This means nobody in the group can even find it, though, so if anyone else wants to join, you'll have to PM one of us to be added!

Italychick

just had my hubby do a new search for it, he gets the message "content not found." So looks like secret did the trick.

Carrie37

Allison, my MO has never said anything about not getting a complete path response from my chemo. In fact my BS has told me that I am treatable and curable. I'm not so sure abou the "cure" part.

BBwithBC45

The FB privacy is my issue too. I'd like to join, but I don't want anybody else on FB know that I am in this group.

Maybe we could name it "Jack's friends"? He is our mascot after all.

Italychick

that would be awesome to call it Jack's friends. Or Divine Sisters of the Traveling Bracelet or something else that is corny haha!

BBwithBC45

Jack's Groupies? Jack's Tutti Fruttis?

I better stop.

molly1976

I changed the group name to Sisters of the Traveling Bracelet!