Calling all TNs
Comments
-
mitymuffin, i am currently on weekly taxol. Just had my fourth yesterday. I take the glutamine everyday and so far so good. I don't take any nausea meds at all, my onc. told me I shouldn't need them and I don't thank god!! The only se's I have are tiredness, acid reflux and hot flashes ugh. But I will take them compared to what I had with the ac! Meece, that is horrible about your doc! I hope you find a new caring one!
0 -
Heads up ladies-They make Chocolate Wine!! It's from Sweden and I can only find it at a little winery we have here in Marietta GA Taste alot like Kahlua
0 -
Mitymuffin- Got the o'k to take the Claritin and L- Glutamine right away. Onc pharmacist said it also may help with potential mouth sores. Got the o.k for everything else 72 hours after taxol treatment she said to wait on my multivitamin also, which I didn't know.
Jenweg and the rest of you who give the updated on SE from taxol. It sure helps with my optomism. Hot flashes along with the steroids kept me up all last night. Thanks for the input on nausea. I hope I'm the same and don't need them either. Sure am looking forward to feeling better than I did on AC. How exciting to know you have already done your 4th. Thinking of all of you and sending prayers your way.
Jenwig do you take Zantac for your acid reflux ? It sure helped me when I had it with the AC.
0 -
Hope all you ladies are doing well today. So many questions we all have but it seems like there are so little answers out there. I have my 4th taxol this afternoon and I am going to ask the PA about some of this stuff to. It is one of those things you just NEED to know what is going on with your body and what will be happening and sometimes the docs just seem like such robots they dont really look at how it mentally effects us not knowing what comes next. I will have my radiologist apt. next week so hopefully I can get some answers there to. I will share whatever I find out, if anything:) Have a great day everyone.
0 -
mitymuffin, i take a prescription for prilosec for the acid reflux. I take two tablets a day. It worked fine with the ac, unfortunately not so good with the taxol. But hey if that is my worse se, I WILL TAKE IT! haha
0 -
I suffered terribly with hotflashes from chemo, they did seem to intensify with Taxol. I also noticed that they were worse when the steroids were running through my body and when I took pain medication. Months after chemo I was still suffering with hotflashes so my dr put me on Effexor - now I have them maybe once or twice a week rather than every hour of every day.
0 -
Had my first Taxol yesterday. It went well. had a funky reaction to the Benadryl drip. My arm got ice cold and had horrible pain running down it. Also got tingly all over and very light headed. Onc nurse gave me a hot pack to put on my hand near the IV and a warm blanket to put over my whole arm. Everything felt better after about 5 minutes. Just kind of freaked me out. No problem with the Taxol drip thank goodness.
I was up until 5am last night though. Guess its the steroids and the Benadryl. Only slept a few hours and have been up all day. Feeling good.
I am taking Claratin. I took it for the Neulasta shots after the AC. I would take it the day before the shot, day of, and two days after. Think I will take it everyday during the Taxol. I asked my onc. about the Glutamine and B6. He said I could take both. He said Sloan used to tell their Taxol patients to take both but they stopped because it doesn't work. I plan on taking it everyday also during Taxol. (Did I mention I don't like my onc?) Anyway he also said I could take Gingseng for energy if I wanted. So I'm taking that too. I figure whatever I can take to help. I will. I'm also doing acupuncture but have to stop due to the cost. I can't afford it anymore. I also had switched all my groceries over to organic but can't afford that anymore either. My grocery bill more than doubled. Its so annoying that good untainted food has to cost so much!
Anyway, feeling good. Waiting to see if I crash. Can anyone on dose dense Taxol tell me if you get the chemo fog and extreme fatigue like AC? AC would knock me out on the couch for 3-4 days each time. I really could not function at all on those days. Hope this is better! -Donna
0 -
I took valium the night before and 3 days after taxotere. I only took it at night to help me sleep. It worked pretty well.
0 -
Bad news ladies, the chocolate harvest on the ivory coast has suffered some sort of blight and the price of chocolate is doomed to rise!
0 -
Donna..I took dd ac and dd taxol also...I think I felt more normal during taxol...that benadryl kept me awake also....the benadryl high..never slept much but at least I was never late for work..hopefully you can get a good night's sleep sometime...don't think I ever crashed..but after chemo and rads were over we went on a short trip to the ocean...I would go to bed at 9:30..sleep until 9:30..take a nap on the beach..it was just what I needed...Oh I think I slept the whole way there and home too!...
Meece..I will never give up my chocolate! That is bad news..I guess the price of wheat is going to go way up also..along with coffee...
0 -
Well I am on the weekly taxol number 7 and it seems that I am getting more tired with each treatment - anyone else? Days 3 and 4 I am sleeping all of the time. I thought that this would be better than AC with the fatigue but am not soo sure. At least no nausea!! Hot flashes - yes but those I can deal with. Mouth is getting more and more icky tasting also. 5 more only boy oh boy I can't wait.
The only food that I am having a problem eating are tomatoes - which I have growing out my ears right now!! I want to slice them and eat them sooo darn bad but I get such bad GI pains!
Good news - my insurance is paying to send me on a 4 day retreat for breast cancer patients in October when I am done with Chemo!! How fun and exiciting! Has anyone gone on something like this before?
good night, Kelli
0 -
mitymuffin: I hear the leg cramps could be helped by Magnesium. L-Glutamine is great! Wait 72 hours for antioxidents but not sure about the other.
0 -
MBJ, thanks for the magnesium tip. Maybe thats why the electrolytes help also, as they have some magnesium.
Workmother, for what its worth, check out the Sloan Kettiering website on Ginseng. They say it is contraindicated for breast cancer as it may stimulate the growth of breast cancer cells. Of course they are very conservative, and you must make your own decisions.
Laurajane, how does the Claritin help? Does it help with the constant stuffy/drippy/bloody nose, or is it bone pains?
Kad22, I was wondering if the Taxol fatigue was cumulative. I'm certainly more tired after Taxol number 4. That is so interesting about your insurance paying for you to go on a retreat for breast cancer patients. Wow. I hope they let you rest a lot.
0 -
mittymuffin: I grew more and more tired with each treatment. They really do bring you to the edge of death and back again. Give your body extra time to rest and don't push yourself! I let myself sleep as much as possible and I found that the alpha lipoic acid 600 mg 2 x a day with food (don't take after 3pm or you might not sleep) has made a world of difference!
0 -
Meece - Thanks for the info on the chocolate, but at this point I think I would pay just about anything:)
0 -
Oh Meece....Say it isn't so!
Kelli-Tell me more about this retreat.
Mitty Muffin-for me, and every woman is different, I would be pretty low for about 4 to 5 days after treatment. Just kinda like I had the flu. I took long baths, read books and watched allot of old movies. It didn't get worse for me.
0 -
PauldingMom - it is called Infinite boundaries retreats for breast cancer recovery. The brochure that I got gave me this website www.bcrecovery.org but when I looked all the retreats were located in WI. not sure if there is anything out there in other states? Sounds very relaxing and the reason my insurance is covering for mine is the one I am attending lets teachers go and our insurance covers it. I can't wait!0
-
I went to my new accupuncturist today and got a lecture on how bad chemo is, like I didn't know. She scared me, but she did agree to try and work on my immune system and other SE. She recommended I go to her 5 days after Taxol and the day before the following one. I was hoping she could work on me today. I had Taxol on Wed. and my lower back is aching. I feel like I have a kidney infection. Anyone else have this after their first dose?
Kad22- Congrats on #7. Your retreat should be wonderful. How did you find out info on it.
Mitymuffin- Sure helps with my runny nose and watery eyes. I haven't had the nosebleeds yet. It helped with my bone pain considerably with the shots after each AC treatment. Did you have GI pains with AC?
Titan- Your beach trip sounds wonderful.
Jenn-3- Have you asked about standard herbs for hotflashes like black cohosh and red clover. My Onc will be back on Monday I am going to ask her about taking those to possibly help.
0 -
Wow! Can't believe your accupuncturist lectured you. I wonder if she knows that chemo is the only treatment for TNS.
0 -
laurajane: Personally, I think it's wrong to lecture anyone else on their choices. Claire is right, chemo is the only thing that kills TN. I did all sorts of holistic supplements and treatments, but chemo and surgery saved my life. Doing both increases our chances of recovering faster. I never thought I would have chemo or an MX, yet here I am, a survivor.
Meds are kicking in so to sleep I go.
0 -
Hi all - I am 55 years old. I was diagnosed with BC 6/15 but did not find out I was triple negative until this week, when I saw my first oncologist. THIS WAS A SHOCK!!! I had a lumpectomy 7/29. My surgeon gave me only good news ....no nodes, clear margins, etc. So I'm still trying to absorb this.
Oncologist is recommending DD AC x 4 and Taxol X 4, followed by radiation. He wants me to start chemo by end of August. I don't get this.....everyone was taking their sweet time with biopsies, MRIs, PET scans, etc & I was told there was time for all of that. Now chemo needs to start ASAP? Will be seeing another onc next week but don't expect to hear much different. Then I guess I pick one and off I go on the chemo train. Scared to death.
0 -
Hope60, I am sure your med team is recommending what they feel is best for you. TN isn't always setting you up for the worst. If you don't feel comfortable with what they are saying, seek another opinion.
There is life after Chemo. I am six years and one month past my last chemo!
0 -
LauraJane, I felt worse on AC than I knew I could feel. I'll take childbirth any day compared to AC, although no pains really just misery.
My accupuncturist wanted me to take Chinese Herbal supplements to help with the chemotherapy side effects, but I refused. She has learned that I'm simply going to do what the doctor says.
0 -
Hope60 Chemo is scary..no doubt about that..but you can do it! It is NOT fun but very doable..and it is quite normal to begin chemo 4 to 6 weeks after your surgery. I started chemo 39 days after my lump...you may as well get started and get it over with. I begged to start rads the week after chemo was done but they wouldn't let me..had to wait 3 weeks..total time between surgery and done with rads was 6 1/2 months...then I began LIVING again..you will too!
I almost did the acupuncture thing but I heard that it really hurt the first time so I freaked...plus I was almost done by the time I considered it....
Laurajane..your acupuncturist went over the line with you...but I wouldn't say too much since she has the needles! Ha...
0 -
HI Everyone. My name is Carol and I am 53 with no children. I am switching over from the E5103 study discussion group. Unfortunately I was alergic to Taxol and decided to get out of the study since I would only be getting the study drug (or placebo) and no other chemo. Since I have read that chemo is good for us TNs I decided to stay with the chemo alternative. (once they unblinded me I did find that I was getting the study drug so I did get 5 doses). I just had my 2nd Taxotere yesterday. I will have it every 3 weeks x 4. Under the study I had 4 AC and 1 Taxol. I have been very lucky. My SEs have been minimal. I work full time and only take of 1/2 day for chemo and then my Dr/medical appointments. One of the worst things for me is taste. None of the things I love the most (Pepsi, chocolate) tastes good. My friends have been wonderful and are very supportive. Family (??). Both of my brothers live out of state and they are boys - they don't understand the seriouseness of this. Unfortuneately my mother passed away last month and that week was very hard on me. My best friend from FL is visiting this week and I have really enjoyed the company. Makes a big difference. Well I guess that catches you up on me. Stick with it - don't let the SEs get to you. Together I hope and pray we all make it through this and can still be talking to each other 10 years from now, espcecially those of you with young ones. If anyone lives in the Chicagoland area, maybe we could start a dinner group like once a month? Any thoughts?
0 -
Hope60 - Nice to see you over on this thread - and welcome. As Titan mentioned, your timing seems pretty normal. I had 2 surgeries 4 weeks apart (a lump and SNB, then ALND), started chemo about 3 weeks after the second surgery. Good that you had clear margins and no node involvement. The suggested chemo regimen is also pretty typical - you will find many ladies here (and on the Chemo board) who got through exactly what you're facing. Mine was similar, although I did 4 dd AC followed by weekly taxol. Chemo is a scary thing to face, but once you do your first treatment, you'll know better what to expect... and it's all doable!
0 -
Hope60: I found out I had TN in mid September, the weren't done with all of the tests until October, then my dr said to go through with my travel plans in November, so I didn't start chemo until mid November! My other dr was really angry about the wait because TN can be so aggressive, but the TC x 6 killed it completely and they took out the remaining dead tumors when I had my mastectomy. It seems on the East coast they do AC + Taxol and on the West coast, where I live, they do TC only. It worked 100% for me and I didn't need radiation. If you cleared the margins, you should be fine--they just want to get any stray cancer cells that might remain in the body microscopically. It was, for me, kind of like having the flu once every three weeks. Hang in there and you will be fine. We are all here to support you through your treatments.
0 -
MBJ - I'm on the east coast and had 4 x TC. She didn't want to risk heart problems with the A and didn't see a need for it as I had all clear margins and no node involvement. I had the MX first and then chemo about 4 weeks later.
0 -
Thank you all for your words of encouragement. I feel so much better since I found these boards!
0 -
Claire82: I only mentioned the difference because this was told to me by someone else who went to the East Coast to get treatment! I am glad your onc didn't use the A, as my onc also doesn't like to use it because of heart problems. Since both sides of my family have heart issues I sure wouldn't want to tempt fate!
Hope60: Get 3 opinions--I did and it really helped me make a decision that was best for me.
0
