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Piper, I know we will still have to take the Neulasta shots, but am not sure about the Emend. I am going to my oncologist tomorrow and I will try and remember to ask her. (I am writing things on sticky notes, now if I only remember to bring them - chemobrain!!!)
And taxotere and taxol are known to cause anaphylactic reactions which is what an allergy to bee and wasp stings are. I blow up if I am stung and if it is severe enough I have to go to the hospital. If you are allergic to bees or wasps or any foods like shellfish, you want to let your onc know that so they can watch you very carefully while they are giving you the infusion. That way if you start having a reaction they can immediately administer more Benadryl or perhaps stop the infusion altogether.0 -
Piper...regarding your emend question...I'm actually getting decadron and aloxi via IV before the chemo. I'm not taking anything else although I have a supply of compazine just in case. The only thing I remembered to ask the onc nurse about was whether I would get the neulasta shot when I switch to Taxol. She said she thought so but it varies. Sorry I don't have more info yet.
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Melanie, so happy to hear that Dr. S can do your reconstruction!! Have you had a chance to talk with him yet? He is so great and once you meet him in person you will feel like you have known him forever! He makes every single patient feel so special. Hopefully Beth can get all your insurance stuff done and you will be on your way.
If you do decide to do recon with Dr S, please let me know. I have a list I made up right after my surgery that is kind of a what happens when, what to take and where to stay type of thing.
Did you already have a bilateral? Or will you just have one side done? Or did you have a unilateral and are now going to have a prophylactic on the other side?0 -
Carynn and all... I called first thing this morning to get in for the neulasta shot and got in at 2:30 without a problem. The tech told me the cut-off was about 72 hours (not a week) but they flex a little on that (72 hours passed yesterday for me).
Darn, I felt like crap today. Started off okay this morning (I'm home on 'vacation' this week). By the time I left the onc office, I was faint and yechy. I don't think I ate enough today. My mouth tastes awful and my usual drink of tea in the evening tastes like it's had nails soaking in it. Down another 3 pounds since last week's weigh-in. Hmmmm....
The reconstruction discussion is of great interest to me...I haven't had my surgery yet and am just now starting to seriously investigate my options. I haven't even had a detailed discussion with the BS yet. Funny, the thing on my mind today as I look at the 'one-step alloderm' approach is can my BS do it and will I offend him if I go elsewhere. Silly, I know. I just don't know enough about what he can do but his reputation in the area is stellar and he was the chair of the BS Assoc. of America or some such thing. A little confession...I'm thinking about other cosmetic options as a little 'treat' when I do have my surgery... a little nip, a little tuck...Voila!
Good luck to everybody stepping up this week. AC#4 hasn't been that bad for me although I feel like I'm losing track. It's all a blur lately.....0 -
Palms, re dry skin...what I've noticed is that my skin is suddenly 'old' looking...wrinkly. I slather on kerilotion and all sorts of other moisturizers, bathe in oil and salts (mostly for the aromatherapy I think) but still...I feel old. My face especially. I haven't found the scents to be problematic so far. I use a baby gel/oil or smear my facial cream on my head since the hair has almost completely given up the ghost. I wonder if the skin tone comes back after chemo?
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Twink, usually a BS just removes the breast tissue and a PS puts stuff back in. I thought of the nip and tuck stuff too, but that is too much surgery at one time and they won't do it. I am thinking, though, when I go back in for that nipple reconstruction...
I am in the same situation with the skin being old and wrinkly and kind of grey looking. I am hoping it will come back too.0 -
Vegas; I have not talked with Dr. S yet. When I make my final decision, I would love to have your input. Thanks so much for the offer! I have already had a bilateral. I wanted both gone when I found out that one had ca. BS wanted to save the "good" one, but I refused.
Twink; I am glad you were able to get the shot, but so sorry that you feel yucky (one of my granddaughter's fav words right now). I was having the same problems with finding something to drink, but I finally tried lemonade and now that is mainly what I have been drinking for 2 weeks. Also...I do really think my BS is at the top of his game and is very highly regarded as the "best" and I am not disappointed in my mastectomy at all. I just think the Alloderm one step option could be the answer that I have been looking for and the doctors that are experienced with it are few and far between.0 -
Melanie, I hear you! The easiest decision I had to make in this whole process was having both breasts removed. I watched my step mom, mother in law and father in law all go from cancer, and even though I really never thought BC would happen to me (absolutely no related family history), just having it in one breast was more than enough. I was truly angry at my breasts for betraying me, and from the time I got my diagnosis I did not want to touch them and did not want my poor husband to either. I just told all my friends I was having an extreme boob job and then later got around to telling them about the cancer.
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Piper - for what it's worth, my onc says no Emend necessary on the Taxol (and my Emend box now says no refills - I had it filled 4 times) but the Neulasta and Aranesp (if necessary) are still a go. It does appear, tho, that this opinion is as varied as the oncologists.
Vegas - The water thing is breaking my heart - I love my water here at the house - I'm back in the mountain and the water is just perfect (not hard, no chlorine or added chemicals) - when I can't take my own water, I use Dasani because the mineral enhancement makes it taste more like my own. Other waters taste so bland to me under the best of conditions and now that's how my good water and also Dasani taste. We'll be anxiously waiting for your Taxotere report. Good luck.
Melanie - I guess I'd expect 10g x 3 for the glucosamine. I had found that recommendation in another topic on this list. Probably have trouble measuring out 10 mg
Someone (I think Linnie) mentioned the Sympt-x brand but I haven't been able to find it. What are you using and where did you get it? I'm thinking I should be able to find something at Walmart. A friend was inquiring as to why the powder instead of the pills - she's a nurse - but I think she answered her own question thinking the powder is probably more 'pure' than the pill thing.
Twink & Vegas - Ditto on the dry skin. My sister gave me jars and jars of the heavy Mary Kay face cream and the creamy cleanser. I hate the stuff because I feel like it's pulling my face even further towards the floor with the weight but I really slather it on before bed and it's amazing how little time it takes for the skin to absorb it. One more curse of this frickin' disease.
Well - gotta get back to work. To those at the bar today, drink wisely and responsibly.
Hugs to all.
Phyl0 -
Bumping up today's bar reservations -
Sybil, Palms, SammieKay - thinking of you...
Tuesday - Sybil, Palms, SammieKay
Wed - Karen (Last A/C)
Thursday - Carynn (last A/C)0 -
Sybil, SammieKay and Palms thinking of you today and holding your hand as you sip your cocktail. Palm, try to relax, the actual infusion is so uneventful! You will be fine and we are here for you.
Vegas, the one-step is definately the way of the future but way out of my ballpark. No insurance here to cover it, total self-pay and $40K for a set of boobs? They are just not that important to me, I'm basically just trying to fill a bathing suit top or get dressed without the falsie in place. For those with the insurance to cover it, that sounds like the way to go! I'm gonna go ahead and see a PS here, looks like expanders for me since I am not a candidate for the trans stuff and wouldn't want another scar on my bod anyway.
About the Neulasta and taxol. My onc said for me to do DD (every 2 weeks) I HAD to have the shot. Period. If I do the 3 week then no, don't need it.
Hello Phyl......where have you been girl? Sooo good to hear from you. Love, Marsha0 -
Piper --
My onc says no Emend. Also, he recommends the neulasta shots, but according to my chemo nurse, not all oncs do. I forgot to ask what meds my oncoloist suggests to take after. They didn't give me a new prescription. I'm not sure if I'm still going to be taking decadron, which I used for 3 or 4 days after AC. According to the posts I read for the January cruise, you don't need the decadron. You can always call your oncolotists nurse to find out more.
All of this talk about breast reconstruction is very intersting. I did a lumpectomy, but am considering a prophylatic bi-lat mastectomy and immediate reconstruction. I probably wouldn't do it until next winter or later, so I hope to count on all of you for advice then!
Melanie -- I find that lemonade works too. I dilute it with water, so it's not to sweet.
One of the things about taxol and taxotere is the actual solvent that they are dissolved in -- it can be pretty toxic, which is one of the reasons why they infuse the taxanes so slowly. Abraxane is a taxane that has been "solubilized" with protein called albumin (found in eggs). It is approved for late, but not early breast cancer. This means that insurance companies won't pay for it for early breast cancers (i.e. stage I and II). However, there is a trial for it, so maybe it will be approved in the future. If I remember correctly, Catherine is on that trial. Catherine -- please correct me if I have given any incorrect information.
I'm usually better in the mornings than later in the day, and I'm still not feeling great this morning, so I have a feeling this is going to be another bad day. Also, dh is home on Tuesdays -- he took them off all semester so that he could take me to my chemo treatments. So, I'll spend the day avoiding him and trying not to look so pathetic -- I know that he's got a lot of work to do today.
Hugs to all getting treatment today!
-- Hillary0 -
Still reading here and keeping up with you brave gals! Had an odd thing happen yesterday. My insurance wants to know why I need genetic testing so hubby calls the bs office and they say, you need to call another office. He's like huh? Insurance wants to know the diagnosis etc which should come from the surgeon's office right? Might explain too why insurance has no info on why genetic testing was being done! Thus I guess the merry go round begins on who is going to pay for it...sigh. My bs said genetic testing will determine if I need to have a bi lat masectomy down the road as I had two lumpectomies.
I'm still on the Zantec to knock down the after effects of chemo but otherwise radiation treatments are still going well for me! No burns or rashes or fatigue yet! 14 down as of today and 19 to go. I found I had lost my pubic hair just last week! So the one dose of chemo is still kinda bugging me!0 -
Hi everyone! Lot's of posts to catch up on! It's hard to keep track of them all! And so much good information I don't want to miss any of them.
I'll be going for my 3rd chemo 4/4, I'm a little nervous about after hearing how many had such a hard time with the 3rd.
We found out last week we are having a baby girl! I've really started to feel her moving around this week and am so relieved! After tomorrow I only have 3 more chemos and I'll be done until after the baby is born.
I'll be thinking of those who are at the bar with me tomorrow. Hope all goes well for everyone who visited the bar this week.0 -
Phyl, I am a huge water drinker too and this is pathetic. I have been mixing half water, half lemonade or half water, half OJ lately.
Marsha, it is so sad that you don't have this choice, just because it is less surgery and so much quicker. You could try calling Beth in Dr. Salzberg's office. It would not cost you a dime to have her see if she can get your insurance to approve it. They do totally free consultations. And remember, the cost I quoted you included the bilateral mastectomy, sentinal node biopsy, MRI and reconstruction. You would not need all of that. You DESERVE more than just something to fill out your bathing suit tops!
Congratulations TinkC on your baby girl!! Wow, I cannot imagine how you are doing chemo and being pregnant at the same time. Prayers for your baby's good health and your strength during all of this. When is she due?
Jan - you might try the web site www.facingourrisk.org. There is a ton of info there about genetic testing and Sue who runs the site could probably give you some great ideas on how to get the tests paid for. Just post a new topic and you will get lots of support!
Good luck to today's ladies at the bar, especially Palms as she goes for her first treatment. It's not quite so bad once you get that first one under your belt.0 -
Hillary, yes you are absolutely right: I am in a study the purpose of which is to determine toxicity levels of Abraxane and Avastine in tx for early stage breast cancer (grade 3, no visible mets, axillary dissection), the goal being to have those 2 (effective) drugs approved by the FDA for early BC protocols. The albumine in which Abraxane is dissolved promotes faster delivery to the body (30 minutes infusion) and does not require premedication (no steroids or antihistaminic, nor anti-nausea). I think the onc said that I won't need Neulasta either... but the neuropathy side effects may not be better than with Taxol... The "guinea-pig on duty" will keep you posted... I also receive Avastine (already 4 times, this will go into December... hopefully it won't be too "toxic").
Holding hands with the girls at the bar today, and wishing good recovery to those with a hang-over...
Apart from keeping an eye on my red port incision, things have been very good this first week after #4 (and after #3 too), the tip of my fingers is peeling off, but nothing terrible... and my nose is runny again (but I'll take a claritine...). My eyes are less watery-pink-sticky that after #2 and #3... so, overall, AC went pretty good...
Linnie, Theresa, and a lot of "non-posters" out there, how are you doing?
On the reconstruction front, I follow your info exchange, which is very interesting; being 54, I chose to just stay with my "Golem" (Lord of the Ring)look... hoping the scars from bilat. mast will fade away (I am getting some special scar cream, mimosa oil based, to massage...). I will continue my life with a flat chest which I find comfortable and convenient. The twig stories are fun and cute... none to report, since I went the "bandana" solution (I stole my dogs' bandanas -- they never wore them -- given by the shelter where we adopted Zoe), and got used to my Eastern-European farmer lady look... I cannot stand the sight of me bald, so my head is always covered... I read too many books by Soviet dissident writers in my university years -- Solzhenitsyn, Shalamov and others, and all I see in the mirror is a Gulag victim... depressing...
Apart from that, life is beautiful and I try to live completely normally, enjoying every minute of it as I used to do before BC...
I am off for my morning walk...
Love and hugs to all,
CatherineH0 -
Hi Marsha,
Here is Dr. Beckers website. http://www.beckermd.com/publications.aspx
I also noticed a document in his office that mentioned he had done work for women who have issues with funding etc.
Jel0 -
I got good news from my hubby when I got home from rads! Insurance approved the genetic testing!!! My rads doc said my tiny blisters that had been caused by wearing a bra are gone. I've been braless and wearing sleevless men's t shirts that I tuck under my breasts to prevent skin on skin contact and that trick worked. Still no redness from rads either.
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Great news, Jan... one hurdle out of the way...
Glad to read you're not too bothered byradiation SE... Wishing you the best,
CatherineH0 -
Hi everyone. Hope you are having a great day; especially Sybil, Palms & SammieKay!
Hillary Now that you mention it, I only have 3 Emmends left for my last treatment. My Compazine does have a refill tho..hmm obviously Im going to ask when I see the Onc on Thursday. I also want to ask about the glutamine supplement as well. Ill post her answers to my questions here. Sorry to hear that youre not feeling well. Hope the afternoon was better than the morning.
Jan so glad to hear the rads are going well. Ill be starting mine in the middle of the summer here. Kind of ironic 118 outside and Ill need sunscreen, but Ill go to a facility to get zapped and look sunburned.
BTW, great news on the insurance coverage!
Tink dont be nervous. I whined big time about #3, but honestly there were no new side effects; just a little more intense and lasted longer. If it happens to you, just get that pillow on the couch and watch some good comedies. It will pass. Promise!
Catherine glad to hear that youre still making it a point to get out and about. Now stop it right now, Im sure you look nothing like a Gulag victim! My bald head isnt a fashion statement I would choose either, but Im having fun with the wigs and scarves. I mentioned here the other day that my friends brought me two really awesome scarves that I will continue to wear when my hair comes back probably more like a headband than a scarf, but they will definitely get use!
Thinking of Karen tomorrow. Let me be one of the first to congratulate you on the completion of AC! I cant wait to be done with it too! I almost hate to say that out loud tho, as I now have a really hard time finding my tumor. So Ive developed a bit of a love/hate relationship with the red devil. I only mention it for those who already had their surgery, trust me, this stuff is working!
Have a wonderful evening all. See you tomorrow!
Carynn0 -
Checking in for the evening, and feeling a lot better. A neighbor brought by a whole bunch of food and I actually ate a bit of it this evening!
Jan -- congrats on getting insurance to pay for genetic testing. I had a delay in my testing b/c they held up approval. Fortunately, I turned out to be brca1/2 negative. I wish the same for you!
Catherine -- I hear you with the Gulag look! I look so much better (and less sickly) in my wig, but I wish it were more comfortable.
Tink -- I second Carynn's suggestion of curling up on the sofa watching a good movie. I just finished "Akeelah and the Bee", which is a very sweet little movie. We should get some more movie recommendations going!
Karen and Carynn -- I hope your last AC doesn't do a surprise turnaround on you two like it did for me. In retrospect, I don't think that I drank enough water this weekend, which is why I felt so bad yesterday. Forced down the water today, and I think that it really helped wash the bad stuff out of my system.
Hugs to all!
-- Hillary0 -
I just asked my onc today if I would need Emend for the taxotere and she said she doubted it, that if I need anything Zofran or Compazine should be plenty.
Also asked if I would need to do rads, as no one has said anything to me about it really and I had not asked yet, just wanting to make it thru chemo. I was delighted to hear that rads is not standard treatment for my diagnosis (though of course my onc followed up with I should talk to the radiology oncologist just to cover her you know what!)So I have decided not to do rads now (I am not sure what they would radiate anyway as I already had the bilateral mastectomy) and will keep that as a bullet for later if necessary. (which it hopefully will not be!)
I am not going to be able to have my first taxotere this Thursday as planned however. I have a viral infection and a small fever so we are putting it off until Monday. I was very disappointed (but of course also a tad relieved as well) since I really just want to get this all over with!!
Tink, I did not have a hard time at all with number three, it was number four that kicked my ass, but more just because it put me down on the couch for two weeks. I didn't have any new side effects or feel more nauseas. I just think the cumulative effects make you WAY more fatigued and just kind of yuck. As Carynn said, you can get thru it by lying around, just for longer than the previous treatments. And remember, all of us are different and react differently to each treatment.0 -
Thanks everyone for responding to my questions. My dh told me this afternoon that someone he works with had seen me. This person told him that he noticed I lost my hair and wanted to know if I had cancer. Response of my husband was we had a bet and she lost so I shaved her head. The guy actually believed him.
Will have my last a/c on april 12. Then on to taxol.
I have been reading all the postings you have had on reconstruction. I did my bilateral and reconstruction at one time. I chose the DIEP and do not regret my decision.
Piper0 -
Piper, that is too funny! Here they have a bar on St Patrick's Day where people go to shave their heads in honor of breast cancer, and many of them are young girls.
I have had several friends that had the DIEP and loved it. I had checked into it, but did not have enough fat to make a decent sized boobie and would have needed implants anyway, so I just decided to go for the alloderm. Did you go to NOLA?0 -
Hi Carynn and all you other dear chemo cruisers.
Well, I sailed through Taxol 8 of 12 today. I get premed of Benadry, Zofran and Zantac.
Went to PS for infusion of expanders. "Filling Station" LOL.
NO problems with any of the procedures. This makes 240cc in each side.
I was a DD before surgery and look forward to having a small C. PS said we could do some liposuction and sculpting at the time of the implants. Has anyone heard of the "gummy bear" silicone implants? That is want he wants to use. Says I will be his first patient with that product. Supposed to be zero chance of silicone leakage.
My onc. approved the use of L-glutamine. I bought mine at GNC health food store in the mall. I forgot to ask the dosage, so guess I will go with what I have read here.
Will be holding your hand on Thurs. Hope all goes well.
Sammie Kay0 -
Jan, great news about the genetic testing. I am waiting on insurance for mine. The insurance lady at onc.'s office will fight the insurance company for me.'
Hillary, glad you are feeling better. Take care of yourself. You are in my thoughts and prayers, as well as all of you who are nursing SE this week. Sammie Kay0 -
Yes I did have the DIEP in NOLA. I had lost about 20 lbs before being diagnosed so I almost did not have enough fat. I had chosen this because when I had bc 18 yrs ago I had radiation. Two breast surgeons told me because of this I was not a candidate for implants.
Piper0 -
Catherine, good to hear from you. Glad you are getting out and enjoying Spring. I bet Toby is too. I admire you for your acceptance of yourself. I am so vain. I wish I was more accepting of myself.
Marsha, good luck with your recon. I didn't really know about these other options. I was not a condidate for tram flap because of an abdominoplasty at the time of my hysterectomy about 10 years ago. So I went with bil.mast with expanders and breast implants. I will be a hot senior citizen with perkie breasts. LOL
Everyone is different, we are all different ages with different expectations and different needs. I say go with what makes you comfortable. Sammie Kay
{{{{{{{{{{{{{{{Hugs to all }}}}}}}}}}}}}}}}}}}}0 -
Piper, what is DIEP and those other acronyms? I am so out of the loop. I just had to ask, I probably should know, but I can't think of what that could be. HELP LOL. SammieKay
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Hi Tink,A big congratulations on that wonderful baby girl. You and your little ones are in my prayers. Sammie Kay 0
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