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Anyone starting Chemo in Feb?
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Twink, Catherine H, Vegas, Narberth, Cath, Marsha (and anyone I may have left out) thanks for your replies & advice. I am getting pretty nervous, as my first chemo day Tuesday is around the corner. It is always fear of the unkown isn't it?? You are such a good group here and sound like you all are doing well considering what we have to endure with this chemo thing! My prayers TO ALL OF YOU for a quick second half to your treatments! I will be staying tuned (and always welcoming any special words of wisdom from my new "mentors"). Been there done that! I love your postive spirits!!!
ps... bty, did most of you do dose dense a/c the first part? And for those taking supplements, are you taking everyday? Heard some will help ward off the neuropathy.0 -
Palms -- A lot of us did dose-dense AC for the first part. The worst side effects are hair loss and nausea. Neuropathy comes with the taxol/taxotere, which is what most of are will be starting within the next couple of weeks. Check back and we'll have better advice for you about that.
For the AC, I didn't take any supplements, but it is often recommended to take a regular (not mega-dose) multi-vitamin. I also find that I need to take colace (a stool softener), as a lot of the drugs are constipating. Some folks use senokot-S, a laxative, but it was too strong for me and lead to diarrhea. Sorry to be so graphic, but it's better to know!
One other recommendation that may not have been emphasized -- get some biotene toothpaste and mouthwash and use them to prevent mouth sores. Chewing on ice during the adriamycin push also helps!
I still remember the trepidation with which we started chemo. The more experienced bc sisters would tell us that they survived and it was "doable". It was hard to believe it, but now -- with my AC under my belt -- I can tell you that it is doable. You may go through some of the "suckiest" days of your life, but you will get through it!
-- Hillary0 -
Palms; I am one of the few that got tax from the start. I do powdered L-Glutamine, but I cannot tolerate the texture for the first week after chemo. I dissolve 1 tsp in about 6oz's of cranberry juice, once a day. I noticed that it did relieve the tingling in my fingertips that I started having after tx #2. I haven't had any numbness since then. I also take a regular multivitamin, 2 fish oil, 1 calcium and 2 vit D3 per day. I have approved all of these with my onc, which I believe anyone should do prior to taking supplements with chemo. Even my massage therapist would not work on me without prior approval.
It is so helpful to continue to read these posts and to know that others are going through what you are. You will make it!0 -
Melanie...I have not had any neuropathy with the taxotere...but have had some nosebleeds and metallic taste in my mouth. I assume it is the taxotere...but could be the carboplatin too.
I am also on calcium and fish oil and a vitamin...per the onc's instructions.
Will keep the Glutamine in mind though, if I start to "tingle",
Thanks,0 -
Melanie, are you on Taxol or Taxotere? The cranberry juice is a good idea....I have already bought the l-glutamine but wasn't sure what to mix with.
Hillary, I will definitely remember the ice chips...guessing this is to prevent mouth sores. (Hope not pain!!!)
Has dry skin been a big problem with you all? I have some great almond oil... I was wondering about using that after showering. Don't know if fragrance would be a problem, though. ..I also like the 24 hr moisturizing baby lotion. Any special soaps?0 -
Where do you get the l-glutamine?
Melanie, I think I might have gotten the surgery approved if I had had longer to fight with them, but I was in panic mode and just wanted to get the cancer out of me!! Otherwise I would have been in your situation with delayed reconstruction. Now that I am trying to fight them and they know I have already paid for it, it is more difficult. Plus not feeling all that energetic on the chemo, I have just not really pressed the issue like I would have if I felt better. Beth is really great about working with the insurance companies, though, and I think she gets about 90% of the surgeries approved. Isn't it weird to send your "nudie pics" out on the Internet?!!
I will keep my fingers crossed that your breast surgeon left enough skin for Dr S to work with. He is the nicest guy! Coincidentally, about two weeks after my surgery he was visiting Las Vegas and my husband invited him out to play golf. I rode around in the cart with them and putted on the greens and after the round he wanted to do a post op check up on me. So we drove to my house down the road, where he followed me right into my powder room where he sat down on the toilet lid and just talked to me like my husband would as I disrobed! It was so funny, and I did not feel the least uncomfortable. Once he said he did a check up in the parking lot of a bar.
I will be going back to him for my nipple reconstruction (I left it on the right side, but of course had to have the left one removed) later this year even if I do have to pay for it myself, as I would not trust anyone else to do it. He is the best!! 0 -
Palms, I know I was petrified of that first chemo treatment. It is NOT fun, but the treatment itself is not so bad, it is the side effects later. Pretty much everyone I know of has the dose dense AC nowadays. AC makes you nauseas more than anything and of course you lose your hair. I had my head shaved about two weeks after my first treatment as I could not bear the thought of it coming out in big long gobs. (Coincidentally it was the same day Britney Spears had her head shaved, the copycat!) It did come out about a week after that. You head will be very tender and sore, I got some 100% aloe vera to put on it and that helped a lot.
If it makes you feel better, I am just as scared (perhaps more so) starting this new round with the Taxotere as I don't know how I will react to it yet. I am highly prone to anaphylactic reactions and they are going to monitor me closely and do a very slow drip the first time. I also plan on keeping lots of benedryl on hand as later I understand there can be a lot of itching. I have had hives several times from head to foot and even inside my mouth, and it is truly miserable.0 -
Vegas, I am very interested in the one step breast reconstruction. Had a right mastectomy Dec 29, can I still do the one-step? I am a B cup, surgeon left some skin/tissue and I want the other one removed and implanted at the same time for symmetry and peace of mind. I do NOT plan on going any bigger than the "B". I was like you, just get the stinking thing off my body! I went from dx to surgery in 11 days! At the time, wasn't thinking about recon AT ALL but now am. Being lopsided is a pain in the ass and now bathing suit weather is fast approaching and I am tired of the prostisis thing.
Palms, we will be happy to hold your hand thru the A/c you are about to start. I am doing accupuncture for immune building and naseau/fatigue. I was told to eat lots of protein (if you are ER/PR Pos avoid "hormone injected" beef and chicken) Maverick brand meat is hormone free. Marsha0 -
Marsha; I am so so happy to hear that you are planning to have the other one removed. I think you will be amazed at the peace it will give you. It was the easiest choice that I made through this whole thing...both gone. I bet you will be a good candidate for the one step procedure. Time to have more of those fundraising poker games! I will let everyone know what they say about mine. I also think I have plenty of skin left to do a B cup and possibly a C. I was a small D before, but before my children I was a B.
Vegas; LOL...I have never heard of a "powder room" checkup. You gave me a giggle just imagining it. It definitely sounds like you made the right decision with Dr. S. I hope that I too am a candidate. It was rather weird sending those pics out. I was somewhat disappointed when I found out that my PS was not able to do recon after the mast because the muscle would not completely cover the expander, but now I know it was for the best as I am finding out there are better options out there for me. You sound very much like me just from the few posts I have read.
Palms; I am doing Taxotere. 3 down...3 to go! I also chew on the ice chips and drink lots of fluids during tx. I mainly use plastic utensils, but I haven't noticed the metallic taste even when I am out and using metal. #3 did have me experiencing more side effects including a horrible taste, but not metallic. That is when I started drinking Minute Maid Light Lemonade.
Almost time to head out for my massage and then I will go for my BS checkup and weekly bloodwork. Does everyone have to have weekly workups? I sure wish I could skip one every now and then!
I hope everyone has a great week and those starting Tax this week don't experience too many SE's...0 -
Just a quick note to those at the bar this week -- we'll be holding your hands!
-- Hillary0 -
Marsha; You might want to email Beth bcerbone@nygplasticsurgery.com and you will need to send pics, so you might as well get the camera out...don't be too shy...lol.
Also, those just starting Taxotere. I had an allergic reaction on my first infusion. They stopped it, upped the benadryl dosage and started it back slooooowly. I haven't had problems since then. I don't take any pills beforehand, but my premeds in the IV are 20mg decadron, 10mg benadryl.0 -
Melanie, I am SO allergic to bees and wasps and "unidentified foods" and I think that is why I am so afraid of this first taxotere treatment until I see how I respond. What symptoms did you first notice?
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Good Monday to all my fellow cruisers, especially the Monday bar visitors. You are in my thoughts and prayers. I will head to the bar tomorrow and holding hands with everyone one.
I take Taxol every Tues. This is week 8 and so far(knock wood) no neuropathy. Just by chance I take 6 calcium tabs daily and they have 500% of B6 along with Magnesium. Maybe that has something to do with it. I have had very mild side effects. Some mild fatigue, nose bleeding(mild) and that is about it.
What is one step breast reconstruction? I had expanders placed when the bil. mastectomies were done. I am having them injected every 4 weeks and will do recon after chemo.
Of course I am in a mid-sized TX town and the latest things are not available. Nipples will be tatooed. Because I have lobular bc I opted to have all breast tissue removed.
We sailed for 5 hours this weekend and it was beautiful and very relaxing. I am a little sore from the pulling and pushing against the gravity as the sailboat tips up on its side.
Better go and plant those impatients and petunias I have had for a week. This is the first day without rain.
{{{{{{{{{{Hugs to all}}}}}}}}}}} Sammie Kay0 -
Hi Ladies,
Welcome Vegas and Palms....
Glad to hear most are sailing well.
Patti, so sorry to hear of your bad experience. I hope you are well on the road to recovery.
Marsha, I know you are in Florida. I had the immediate reconstruction when I had my mastectomy with Dr. Becker in Boca Raton, Florida. It was a one step process also. He places the Becker implant, which he developed (in either Saline or silicon, whichever you want. Then he gradually expands the implant over time. No temporary implants, no mulitple operations. As far as I have seen, he is pretty good and has been doing this since the 80's. Just thought you might like to find someone closer to home.
Vegas, regarding Taxotere. I have never had anaphalactic (sp?)shock, but I did receive a reaction to my first Taxotere tx. I started to feel hot, my face, neck and ears flushed and I felt short of breath. They gave me more steriods and benadryl and it worked fine. They did say that it is pretty normal for people to have some reaction to the first tx. But then after that people tolerate it well. I did have a reaction to the 2nd TX (which I was only the 2nd person they had seen this happen to), but that IS NOT THE NORM.
So I think you will be fine. Just make sure the Onc nurse knows your previous allergic reactions to meds or food and they will watch you like a hawk:)
Keep on sailing....
Jel.0 -
Melanie and Jel, thanks for the info on the reconstruction. I went to that web site and that is exactly what I have thinking should be out there somewhere! How much different can it be to take my flat chested friend from an a cup to c cup and not be able to implant without the expanders? I understand for large breasted women, but a little B cup? Yes Jel I would want someone closer to home. Makes me wonder who else in Florida might do this procedure? And Mel LOL at the fundraising. Is that tacky? How do I hint to my friends they need to help me raise money for boobs? teehee Marsha
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OK, tell me why the "red devil" is doing this ... after a rough Thursday and Friday last week, I was feeling pretty good over the weekend. Glad to be done with my last AC. Now, today, I'm laid flat. Nausea, diarrhea, chills.
It's not fair!
-- Hillary0 -
Marsha , sorry not respond earlier but my phone kept ringing!!
You can certainly do the one step alloderm even though you already had a mastectomy in December. The beautiful part about this surgery the way Dr S does it, is there is NO expansion process like Jel was talking about. Basically you go to sleep with boobies and then wake up with them!
I know several women from Florida who have made the trip to New York because they did not want to do the expansions. I had just one surgery on December 11th with both the mastectomies and reconstruction done at the same time. Went in a flat chested A (just like your friend!) and came out a small C. Now the only thing I have left to do is the nipple reconstruction on the left side. The breast doctors in New York specialize in the nipple sparing mastectomy as well. On your prophylactic side you can keep your nipple if you like. They have never had a BC recurrence with any of their nipple sparing mastectomies, as they get so much of the breast tissue out and less than 2% is left.
If you want to discuss this in more detail, feel free to email me at move2lasvegas at aol.com. Here are a couple of links you can also check out on this procedure:
http://www.mybreastreconstruction.com
http://www.lifecell.com/products/194
When you click on the second link an video will automatically start, but ignore than one and click on "surgical approaches." Then choose procedure number 3 with Dr. Andrew Salzberg. This is a video of my doctor actually performing this surgery if your have a strong stomach! 0 -
OK so Jel and Vegas are talking about two different things. Jel you are saying the one in Florida is filled over time but the "filler" is never removed that normal expanders are. And Vegas you are saying no filling station at all but implants put right in just like augmentation is done. Do I have this right? Vegas is the doc in NY the only one doing the AlloDerm? I'm loving the way that sounds! Without being nosey, may I ask a ballpark figure from you? I still have one that needs to be removed and then both implanted. Thank you gals, what would we do without each other? Love, Marsha
PS No weak stomach here, I once watched an autopsy! 0 -
Marsha, I did not have time to fight with my insurance company (I am on a horrible HMO!) and so I just went and did it. When they found out I had no insurance, both the docs and the hospital cut their bills WAY down. All in all it cost us about $40K for everything.
But I am the exception. Beth Cerbone in Dr S' office and Anne in Dr A's office are both great in getting insurance approved. Chances are really good you can get much of it covered.
Yes, Jel and I are talking about different things (though I have heard good things of her doctor as well, it is just a different procedure.) My doctor in New York is not the only one doing the Alloderm, as now other docs across the country are starting to pick it up. But he did invent the procedure and he is going to speak at the national association of plastic surgeons on it. You are right, there is no filling, you just go right to permanent implants. That way they can be the softer silicone rather than the saline. I loved the fact that it was only one surgery and I was done except for the nipple reconstruction! There was no way to get around that too, or I would have. 0 -
Thanks for the advice on the Taxotere, Jel. Wow, it sounds like everyone has a reaction to it!
Even people who are not naturally anaphylactic. I am going to make sure they give it to me extra slowly and have lots of benedryl on hand. 0 -
Tuesday - Sybil, Palms, SammieKay
Wed - Karen (Last A/C)
Thursday - Carynn (last A/C)0 -
Big ol' hugs to Sybil, Palms, SammieKay, Karen and Carynn this week. I vaguely remember that at least a couple of you are on your final AC.
Hmmm - these reconstructive procedures give me something to think about - kinda put it on the back burner as when I started chemo in early Feb, the end (of chemo) seemed so far away - now it's 1/2 thru. When I had my final mtg with my BS before the lt mast, I had asked about also doing a prophy at the same time. He suggested we not do it then but told me my PS would probably make me an offer I couldn't (or shouldn't) refuse. Right after that mtg, I did indeed meet with the PS and his recommendation was a prophy and bilateral reconstruction after rads for both symmetry and piece of mind. I work for the largest rural health care system in the nation - very prominant organization - but they don't have anyone to do the DIEPs, IGAPs, SGAPs, etc. I'm very concerned that I don't have enough tummy excess to do both - He thinks he can get me to a small B and then augment with implants. I have not had another appt with him - was planning to wait at least until I was halfway thru rads. I have been watching these posts on alloderm and reading on the websites. I interpreted it to be an immediate reconstruction solution only - is that not the case? That would probably be a more palatable solution short of travel to NOLA, etc., although both my BS and the PS have told me I would have no insurance issues should I choose one of the options not offered in-network but it sure would be easier for me to do the 3-hour drive to NY than find someone to hop a plane with me and spend 10 days far from home.
Hope you all are fairing well this beautiful Monday. My SEs from #4 were minimal but I definitely notice the increasing fatigue - good thing I can sit on my butt and work all day - otherwise I'll bet I wouldn't move. I finally pinpointed the difference in taste - I wouldn't call it so much a metallic taste, but a numbness in my mouth (which probably makes sense - killing off the taste buds). Anyone know if that lasts thru Taxol? Also noticed increased sensitivity to light and my eyes are always watery and/or slimy.
Wishing all of you dealing with the pre- or peri-menopausal issues the best of the situation. I had no issues except for the hot flashes - my DH used to say he'd wake up and thought the waterbed sprung a leak then remembered we didn't have a waterbed. Rest assured they do get better, but for the life of me I can't remember how long they hung around.
I've purchased my B6 for next week but didn't get the glutamine yet. One of the posts I read says to start it 2 days before and take it thru 2 days after. Guess I'd better get some. I was just planning to take 10 mg 3 times a day straight thru. Anyone have any other input?
Hugs to all!
Phyl0 -
Carynn, as you are doing your last AC I will be doing my first taxotere. I am also at the bar this Thursday at 1:15pm.
Phyl, I had gotten to the point where if I drank water my whole mouth tasted like chemo! It was totally gross. It is just getting to where I can kinda sorta drink water again. Good thing because I usually try to drink about 6 bottles the night before surgery.0 -
Hi Vegas! I added your reservation.
We'll all be waiting to hear how it went!
Tuesday - Sybil, Palms, SammieKay
Wed - Karen (Last A/C)
Thursday - Carynn (last A/C), Vegas (1st Taxotere)0 -
Will someone please answer my questions from my last post?
Do you still take emend on taxol and the shots? also why is it important to make sure the onc knows you are allergic to bees and wasps? I just don't understand.0 -
Palms...dose dense all the way for me...AC and now Taxol to come. You'll do fine. I remember the week leading up to my chemo and especially the day before and the day of...the waiting is torture. The chemo session itself turned out to be anticlimactic. You can do it. It's not fun but you'll be just fine, as we all will be ultimately.
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oops Palms...re supplements...I'm taking mine daily, none of which were 'prescribed' by the onc.
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Piper, most of us are just finishing up our A/C and getting ready to start the Taxol/Taxetore. If you dont see an answer from the Feb group, take a peek at the January board. Good info there as they are "old hats" wtih the taxanes. 0
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Twink -
What was the outcome on your shot? Did they stick hard and fast to the 24 hour rule, or were you able to get it?
Just curious!
Carynn0 -
Hillary; I hate to hear that you are down. This has been such a difficult journey for you.
Piper; I wish I had some answers for you. I have never taken emmend, but I understand that it is about the best anti-nausea med you can take. I have taken zofran after the last tx, but it did not help, so I only took 2 pills and then just managed the best I could through the nausea spells. I would definitely inform your doc about your allergies.
Phyl; 10mg or 10g per day? I currently do 1 tsp per day and it is 4500mg or 4.5g.
Vegas; My reaction to the first infusion of Tax was very similar to low back labor pains. I was out of the chair and the nurses were running. I kept saying "it will pass", but they were not about to chance it. The only other reaction I have had was during the cytoxan adminstration during #3. During the last 15 minutes, it really started burning my nose.
Now about the recon...Beth returned my email today and said that after viewing my pics, Dr. Salzberg said that I would be a good candidate for the one step procedure. I emailed all my insurance info to her. I had a checkup today with my BS and we talked about the one step proc and of course he thinks I should stay with my current PS as he is very cautious and very artistic. But...he will only do the expanders. I don't want expanders. He said they did not use alloderm to repair the muscle after my mast because they figured I would be in chemo and did not want to risk infection. I told him that I felt like it was meant to be and I was glad they had not proceeded with recon. Right now I have ink marks on my chest where he drew his explanation of why my muscle would not have covered the expander. Ughhhh...ink all over my bra also.0
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