Calling all TNs
Comments
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So sorry about your friend Titan:(
Welcome to our group Barbbasile! So glad you found us and I just know you are going to do well with your treatment. Be sure to check out the group of gals going through chemo. at the same time you are. I found lots of great support there.
I feel like I am the only one here who is not getting Taxol. When I bought it up about 6 mos. post chemo. to my onc. he said that they were only using it for stage 5 patients. But I see here lots of stage 1 TNs are getting it. Not that it sounds like fun or anything, but I want to get this thing with both guns blazing if you know what I mean.
I'm also not 100% sure about "Markers". I know after my surgery they gave me "clear margins" but no one has mentioned Markers to me. I feel out of the loop and perhaps the docs. here are treating me with kid gloves or something.
Could someone please explain?
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I had taxetare which is a different form of taxol - it's pretty routine for TNS to get it. Maybe get a second opinion from another onc? What are you getting?
My Onc doesn't do blood markers anymore unless they see a reason for them. There were too many false positives which meant unneeded surgeries to check them out. She felt that they weren't necessary as long as I was doing followups with gyn and colon etc. I also will be having an MRI on my breasts once a year.
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Hey Kelli,
I'm pretty much in same boat; no major meltdowns even though I've finished chemo and just had surgery. They put me on chemo first so after getting the news, I went into research and prep mode for chemo and just trying to get through that while working took so much focus. During pre-surgery prep, I had one doctor persuing my chart and read off of my chart notes "Patient is very upbeat and cheery..." then went into details about last MRI, etc... It struck me that one of my doctors took the time to note my cheeriness... uh, since then, my internal dialogue has been: 1) okay, so, is that so odd that it merits a special notation? Is the next sentence, "clearly she is mentally derranged"; 2) ok so I'm pleasant to the professionals who are working to get my healthy, hmm, do they routinely get sass and attitude from their patients so this is so strange? oh I have sass and attitude...i can bring it if that's the MO around here... 3) well, that's all well and good but I hope they don't expect me to be like this all the time... beejeepers, i've went and established unrealistic expectations now I can't be crabby or I'll get a "NOTE: Patient has now become a pain in the a#$."
I've sniffled a few times; a few errant tears have fallen. I have on occasion, while in waiting rooms or waiting for my doctors, have visualized a full out, throw myself down on the floor, shake my fist at fate epic freak-out, but so far haven't succumbed. Probably trying to control it by not letting it control me, and retain the dignity it has not stripped from me.
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Wyliec7,
I'm trying accupuncture for the first time in my life, and I feel better after each session than I did before. It is always relaxing, but I think it has also helped with bone pain, and energy, and appetite and maybe nausea. Each week I give her a rundown of my most pressing side effects, and she works on that.
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Lisa - I know nothing about markers either. I have blood work done the day before my 3 monthly onc visit but have no idea what he's looking at. Yes it does seem like taxol is pretty common for TNs and also for stage IIIs. Being both, perhaps that's why I got the DD tx. Isn't it weird to be this side of surgery, chemo, rads?
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17 for me on August 18th! I was going to print out that chart but haven't yet...I did spend a long time looking at it though! Took the cursor and moved it around..studied it..moved it around some more..studied it...the things we do!
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Titan - Congratulations on the clear mammo! Thanks for starting the link!
Sugar- your hair looks great! I am trying to put an updated picture on here so you can see my "flowing mane". I'm very proud of it although I resemble a chia pet.
I'm 43, dx'd last October with triple negative. 1.9 cm tumour, one positive node, grade III. Had lumpectomy, chemotherapy (AC x 4 then T x 4), and finished radiation in June.
I feel fantastic, have some "puppy hair" that I have colored shockingly white, and am soooo happy to be done with the treatments. It was hell, as most of you know, but it was manageable, and now it is OVER!
My son graduated from high school and is off to college in two weeks. One sixteen year old daughter at home and she is truly an angel. Friends are great. Boyfriend is great. Life is good.
Coming up for my first "check up" next week. Have been getting a little nervous and of course am sure every pain is bone cancer, cheek cancer, big toe cancer, lol, you name it. Biggest challenge now is eating well, I've got to get on the diet wagon. I take Resveritrol, fish oil, and vitamen D.
My mother just had another clear check up, she is triple negative and beginning her eighth year out. I plan on like mother, like daughter:)
Life is so precious and wonderful. If I can jump this check up hurdle, I'll be happy another three months!
Prayers and warm thoughts to all of you!
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Did anyone of you have the feeling of having a bad flu after the first round of the red poison ???
I had my first round yesterday.. feel weird afterwards but not really sick... think I had a fever at night becasue i did hallucinate.. and today I feel like i have a Bad case of the flu...
and my mouth feels like I have a cotton ball in it.... thirsty to no end.
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Reading different forums, I have noticed that there seems to be a bit of confusion about Taxotere and various words associated with it.
Here, in the UK, Taxotere is the brand name for docetaxel. It belongs to a group of anti-cancer drugs, also known as taxols or taxanes. Docetaxel is an anti-mitotic drug that blocks the division of cancer cells.
Another widely used drug in this group is paclitaxel, for which I do not know the brand name.
When I had chemo five years ago, prior to surgery, I had three months of combined epirubicin/cyclophosamide and then three months of docetaxel. This treatment was done every three weeks.
The oncologist told me at the time that the docetaxel was less harmful than paclitaxel.
Good luck to all of you going through treatment. You can get through this!
Sylvia
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Had a great time yesterday with the kiddos and for the first time I went the entire day at the water park bald, only sunscreen on the noggin...:) It felt great not having to worry about something on my head. Hope everyone is doing well today. Off for the T #2 in a couple hours. Have a great day.
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swiftbird - oh thank goodness I am not the only one!! I am in exactly the same boat as you!! Good to know!
monisch- I got really sick after my first dose of AC (the red devil) threw up and everything. So yes felt like the flu but keep an eye on your temperature!!!
JenC - how wonderful - went bald and everything I am so happy and proud!! Wish I could go totally bald!
Off to the state fair this Sunday - cant' wait - cream puffs here I come!! ;-)
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Jenn C & JenWeg We are almost on chemo sinc. Had my last DDAC a week ago. Start 12XTaxol Aug. 18th. Looking forward to this coming week of hopefully feeling good. Meece You are an inspiration Kad 22- I am following you closely because you are so close to my schedule. I have been an emotional wreck. Holding back tears and waking up crying. I am usually an optomistic person. I feel so out of controll and scared. I have been bleeding for over two weeks after missing a period. I will see about trying accupuncture. My onc has no bedside manners. She makes me feel rushed like she has no time to answer my petty questions. Keeps talking Masectomy I keep talking lumpectomy which is what the surgeon recomends after Taxol. Whatever gets rid of this cancer is what I want. I wish they would do the surgery now to just get it out of my body. Told me at the last visit that my tumor had shrunk considerably from the phsical exam she did. I told her I could not feel a signifigant change and she claimed it was because I felt it to much. Well I had the ultra sound done yesterday and my breast tumor had decreased only 4mm, my lymph did decrease by 1cm. Did anyone else notice a more signifigant change in tumor size after completing the 4XDDAC? Should I expect the Taxol to decrease the size of my tumor? I am still terrified of Taxol SE. I feel like a whining pity me and I hate feeling this way. I do feel a little better today the last AC knocked my socks off. Thanks for this forum. It is so helpful to read your insights. I hope my next post is more upbeat.
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monisch- I was very sick on AC but the reaction varies from person to person. Some people tolerate it very well and others have a difficult time of it. I'm with kad22- keep an eye on that temp. If you go above 100, you need to call your MD for some prophylactic antibiotics.
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Laurajane, the ac was horrible for me, I felt like sh** for almost a full week. I have had two taxol treatments and I am loving life again! (Well not really haha) But I must say I feel so much better now. I am able to only miss one day of work (the day of treatment) for now. Of course it might accumulate over the twelve weeks and I might not feel good for long but I am enjoying it now. Godo luck, I hope you are the same!!!
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swiftbird: Your post made me laugh when I was having a bad day. The part about the doctor reading your chart. It made me wonder what my doctor would write on my chart, probably not upbeat and cheery but maybe I could try for that.
JenC: I am glad you enjoyed the waterpark with your kids. I am going in today for my 4th weekly Taxol. So far I have not had a lot of pain but they give me a lot of steroids. I hope yours goes well without many SEs.
Laurajane: Sorry you have been feeling bad. Just wanted to let you know that I felt much better after my AC was over. Taxol has been much easier for me so maybe it will be for you too. My onc said that Taxol should continue to shrink my tumor.
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Kittycat - I tried the Glutamine powder and it works. I had no neurophaty at all.... Some Gnc stores gives you 20% discount if you tell them you are a cancer patient.
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I would love to take a look at this chart, as I do much better with hard facts and data than just nebulous hopes and fears, which seem to be quite abundant in my life since this diagnosis! I tried to access it by clicking the link and by visiting the SABCS site but am unable to view the poster...does anybody have another way to view it?
Thanks and a good day to all...
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laurajane, I was on taxotere, which is in same family as taxol, and it (and I had DD carboplatin with it) significantly shrunk my tumor. I had chemo first too. THe very first surgeon who diagnosed me wanted to rush me into surgery and recommending double mastectomy. I got a second opinion and they recommended chemo first. I ended up with a lumpectomy and I start radiation soon.
Taxol and taxotere are not a walk in the park but I worked through it too. Hang in there!
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Pamel.ajo - going to the pharmacy today to get the Claritin. I talked with the PA yesterday befor my infusion and he said "I never heard of that but it cant hurt" so I am doing it. Hey if there is any chance I may get less bone pain I am up for it. Did you take it daily or just during the days that you had bone pain? Just wondering when I should start taking it befor it starts or when it starts. They also gave me a script for potasium and said that was low so maybe that has something to do with it to. I just cleaned out the medicine cabinet and I have enough meds to start my own pharmacy:)
Hope everyone has an SE free weekend.
Jen
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I took/take it everyday. It not only helps with bone pain, but sorta stops the runny nose thing too from chemo. I hadn't heard of it either until I came to these boards. I bought a bottle and never looked back. The generic works just as well as the name brand, so save yourself a couple bucks.
Yea, I got a call from the head nurse at the infusion center yesterday after I left. My potassium is low too. Just told me to eat more banana's or drink oj.
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laurajane: We are on a different schedule, as I had a mastectomy in January prior to starting chemo (I just wanted the whole thing off, sort of a panic reaction but I have not had any regrets) and finished DD AC and DD Taxol in early June, with tissue expander/implant exchange in early July. I just wanted to tell you, though, that I also went through the constant tears, trouble talking to anyone without crying, etc. etc. and I have always been a very upbeat, optimistic person, too. As trite as it sounds, it really does ease up as time goes by and you are able to adjust to this new version of your life. I hope that you are able to try some acupuncture...I don't think it helps everyone, but it sure was a lifesaver for me. I also found that writing down my thoughts, even the darkest ones, in a private journal was very helpful, especially at night when my brain really starts swirling. Somehow, the act of putting things on paper takes them off my mind just a little bit and allows me to let go somewhat. I don't know if you are having early menopause because of the treatment, but if so, I think that for some there are some pretty substantial mood swings associated with that, which doesn't help when you are trying to think positively and be upbeat, either, so give yourself a break and don't feel bad when you are in one of those down moods...you just have to ride it out, and eventually it will pass and you will feel like you again. I found that getting outdoors and around others (especially children and animals!) was a good mood-buster most of the time, but there are going to be times when there is just not going to be anything that helps, and you are just going to be blue untli it passes. My personal experience with the Taxol was much easier than with the AC...I did pass out once from low blood pressure and blood counts being low, and I had some pain but not too bad; I was able to combat the low blood counts with diet (beets, beets, and more beets!) and avoided any infections and/or hospitalizations. There is a great cookbook by the Cancer Lifeline people that I used frequently; not only is everything tasty but it has lots of nutritional hints that I found very helpful for during and after treatment. The Taxol did not make me feel so much like I had been hit by a bus, which the AC did all four times. All that I am left with now, two months out, is a few numb toes and a need for a lot more sleep than I ever required before, which in the scheme of things seems pretty inconsequential! Anyway, hang in there and I hope that the Taxol is easier on you as well.
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Pamelajo - thanks for all the info, just got some and gonna start taking it today. Bone pain should set in by monday so I am keeping my fingers crossed:) Thank you again for the info. My potasium must be pretty low if they gave me a script but I also read that low potasium can cause bone pain so with the conbination fot the prescription and the Claritin I am hoping for less pain.
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Hi everyone:
My mother was recently diagnosed of Stage 3, IDC, Grade 3 with multiple axillary lymph nodes involved. Her reports suggest ER/PR negative and HER-2-neu 1+ staining (negative). I do not understand the part of the report about HER2. Does it mean that it is only slightly positive so it can be considered negative and only work with chemo, or will HER2 positive drugs work for her. Also, her doctors are performing another test to reconfirm her HER2 status.
Any information regarding this and possible treatment suggestion would be highly appreciated.
Regards,
Spradhan0 -
Wow! I just love this site! You all are so caring and giving of your time and understanding. I feel like such a newbie, I look forward to being able to give advise and guidance like so many of you as time progresses.
Lynn18 &jenweg - Thank-you for your input on Taxol. I am feeling a little less scared. I am happy for you that it wasn't as bad as AC.
Swiftbird - I had hoped to get on a clinical carboplatin trial but I was not accepted. Did you have lymph involvement?
Wyliec7 - Thank-you for all of your advise. Did you use Glucosamine? You are correct, my Onc thinks I have induced early menapause from the chemo. First she said I wouldn't have any more perods but then I started bleeding and I've been bleeding for over 2 weeks. I'll check out the cookbook. Funny I loved, really loved beets before chemo. Now they taste blah to me, but I'll eat what ever i have to. I had marginally high blood pressure and have been taking fishoil. My blood pressure is now normal but maybe it has been lowered from the chemo?
Has anyone tried MSM for SE?
I felt better today and actually worked in my display gardens for a couple of hours and then had some clients over. Felt like a real person for a bit. I met a psychic last night and she told me I would live to at least 80. Loved it! I am going to a comedy club tonight with some friends hope I don't start balling. LOL
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Laurajane, after I was diagnosed, they did MRI and PET and didn't see any lymph involvement. I honestly don't know if that had any impact on whether they decided on carboplatin or not, just glad they did, for me it worked. It wasn't a trial - my onc and I talked it through and he recommended that course for me. There's no standard treatment for TN so it's really a decision between you and your onc.0
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Laurajane: I have taken and still take since chemo MSM and Glucosamine and about a million other things. It all helps.
Interesting about the low Potasium. I have been on the Iodine Protocal (breastcancerchoices.org) and there is potassium in it, so maybe this is why I never had any bone pain while undergoing chemo.
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This is my first post since I have just been reading all I can on this forum using the new IPad that my husband bought me to help me recovery from my uni-mx (7/28), and I can't get it to work to let me type in the post reply box.
Although I have been a bit overwhelmed by the triple negative information, I do feel better having the information. I go to get my pathology report from the surgeon on Monday, 8/9/10 and see the oncologist again that afternoon. I pushed to have a port put in during my mastectomy because I knew I would be having chemo with my family history (mom dx age 39, lung mets at 40, died at 44), tumor size (grew from 2cm to 3.5 cm in 1 1/2 months) and young age (I am 41). I am so happy that I got the port put in so I can get started with the chemo once I am healed from surgery.
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Greysandy, welcome and what a smart move to have the port put in. I was never given the option of a port. Unfortunately my veins in my right arm have given out and it is quite an ordeal to even get a blood draw. I so wish I had had it. It just shows how knowledge can be your friend. I was given as little information as possible, and I never found this site when I was going through tx.
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MBJ - What kind of chemo did you do? Did you take MSM during chemo same day etc. I am so anxious to hear what supplements to take. My Onc Pharmacist says to only take a multi vitamin and nothing else, other than she did recommend I take a Claritin and a Xantac 1/2 hour prior to Neulasta (MIspelled) shot. It helped considerably. Bone pain for only one day and then gone. I am anxious to try herbs and supplements but she has pretty much scared me into thinking there would be a conflict with chemo. She is obviously old school. The MSM makes sense to me any other recommendations? Also how much glucosamine? The vegetarian tablets I bought are1000MG. I thought I should start taking them now because I start 12Xtaxol on Aug. 18th. Thanks for everyones input.
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I would follow my oncs advice - if you don't trust her - then get a second opinion
or a third
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