Taxol and Herceptin only for stage 1 HER 2 positive?
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Daniella - believe me - the weeks go by fast!
Mary
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I had treatment yesterday. I noticed yesterday morning before treatment that I had a couple of pinpoint whitehead pimples. Then this morning after my second treatment I had a lot more of these little whiteheads. My face feels raw, red and sore, too. Anyone else have anything similar? Should I use acne medicine? When I popped one (I know, keep my hands off my face) it came out really easy, not like a real pimple. Sorry, TMI but this is the only place where we can talk about the dirty details.
With that said, I will save you all the story about my explosive D this morning when I wasn't near the bathroom. You can all imagine how nice that was at 5:30 am!
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Hi Ladies -
Saw my BS yesterday and she checked out the pinkish area of my breast where I got the lumpectomy. Got a clean bill of health!! It is nothing more than edema! I start radiation on Monday! Yippee!!!!
Hope all is well with everyone.......
Hugs
Mary
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Mary,
Hope your radiation is as easy on you as mine was. I am almost a week from last rad and the redness is fading fast. It is starting to look tan. The fatigue is still with me but it is manageable.
Dee
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Mary, so glad about the clean bill of health! Has the neuropathy started to go away? I hope rads are easy on you!
Dee, glad you are doing well. I'm trying not to get ahead of myself and haven't been thinking too much about rads yet. But you and Mary are leading the way for me.
Daniella, I've had a few breakouts and some rough patches on my face but no whiteheads. I switched to a gentler facial cleanser, nothing abrasive to irritate the skin further. I have flipped between C and D myself so I feel your pain on that score!
This week was #6 of my TH chemo. I'm doing well and side effects have been minimal and manageable. No neuropathy to report. Some digestive issues and fatigue are the biggies. My hair started thinning at about week 4. I normally have a lot of hair, and although my it is much thinner now my head is still covered so I haven't had to cut it yet. Maybe it was something about hitting the halfway point of chemo, but last week I felt like I hit a wall emotionally. I've stayed very positive but I guess the emotions and fear to need to work their way out at some point. Staying busy, working and feeling much better this week. And grateful for all the things that are going well!
Hugs,
Sandy
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Seems like everyone is doing well
Congrats on being done w rads Dee and good luck to you Mary!
I have survived ten TH and Monday will mark my eleventh and final chemo! I had to postpone four treatments due to infection, so we have decided on eleven. Next up for me, apart from H is breast reconstruction which looks like it will take place in January.
Good luck and best wishes to you all!!
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good to hear from you, Lynn. Glad you are in the chemo home stretch and doing well!
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Mary - yay!! Off to rads. This is the easy part according to all in the know. Great news.
I had #3 yesterday and had Nurse Ratched as my attending nurse. She put the IV in and then left for lunch. About 15 minutes later I notice a ping pong ball swelling under my skin. The IV got dislodged. Thankfully my nurse from last week answered my call button for help and switched my Iv. Luckily it was premeds and not chemo. The swelling went down and no sign if infection but my onc was less than happy this happened.
I feel like I have a giant sore inside my nose. Or is the inside of my nose just getting sorer every week? That plus the constant herceptin nose drip...yuck!
Explosive D again! All day today. I fasted before and after my other treatments and felt better. This time I did a keto diet for 12 hours, 12 hour fast, chemo, 20 hour fast after. I think that little bit of food contributed to my D and had some nausea during chemo. Next time back to water fasting before and after for me.
Sandy - the pimples are clearing but left lovely red marks. Onc couldn't lower my premed steroids bc it was only my third tx. So I keep looking at my face for the eruption. It got so bad - it was like major cystic acne! I didn't leave the house for days. Onc will lower next week to 10 mg, then 6, then 4 and see how I do. I will miss that little bit of energy the day after treatment but can do without the acne. My SEs are similar. Some fatigue, little digestion issue, dry mouth and by Saturday, sore throat cured easily with warm water and salt. Hope that is the extent SEs for all of us undergoing treatment!
Hope everyone is doing well!
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is your never damage still permanent. The eras I am asking is I have numbness 14 weeks out of chem. Just wondering if their is a time limit on recovery.
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Thank you ladies for all your warm wishes.
On Monday, I will be 4 weeks away from chemo and yes I still have numbness in my face, back, tingling in my hands and feet. I have a neurologist appointment next Monday. Hopefully, he will shed some light on this. I heard it can take up to 6 months to go away. My one doctor asked if they prescribed neurontin. Well, no meds yet. I heard from some people that physical therapy is very helpful and so is acupunture. I'll just have to wait and see what the neurologist comes up with.
Most of these se's are very temporary. There is light at the end of the tunnel. With a non-recurrence rate of almost 99%, we have to deal with the ups and downs of chemo and radiation. When I had the big "D", I looked at it as another way cleaning out of the toxins of taxol! LOL Drink plenty of water and flush out more toxins!
All summer I went without a mani and pedi! Had my first one yesterday. Boy, did that feel good!
I just don't know when to start taking my vitamins again (centrium silver, coQ 10, fish oil, and my 81mg asprin). My husband said maybe some of these things caused it - it makes me wonder. We can just drive ourselves nuts trying to figure out what caused this to even happen. Is anyone, who is on Herceptin only, taking vitamins that you took before your treatment? I know I should ask the MO this question, but I won't be seeing her until November.
Have a wonderful SE - free weekend.
Blessings and hugs,
Mary
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Mary, it made me smile to think of you treating yourself to that mani-pedi. You sure deserve to pamper yourself! I'm so glad you are finished with the TH portion of the program! I have continued to take vitamin D during treatment and added B6 to protect against neuropathy. I wasn't taking a Multi before diagnosis and they told me not to start now.
At this time of of the week I usually start to feel the sore throat and cold symptoms get more pronounced. Last night my throat started to feel a little numb. Anyone else have this? Sometimes my upper lip and nose start to feel a little numb but that may be because I am constantly blowing my drippy nose. I'll mention it to the doc on Tuesday.
Mary, Dee, Lynn, Daniella, and everyone else here, you are getting me through. There aren't many of us TH only girls posting so we have to stick together!
Hope you all enjoy the rest of the weekend. My Sunday paper just arrived so I am settling in with it!
Hugs, Sandy
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I start getting a sore throat by the 2-3rd day, too. My nose is super sore. I think I have a sore in my one nostril. It hurts terribly. I get some relief when I use the neti pot and then coat it with aquafor using a q-tip. I take b6, 30g Lglutamine powder and D3 - plus a whole bunch of other supplements for my hair since I'm cold capping. The l Glutamine is gross but I break it up into two servings. I haven't had any numbness or tingling but that could be bc I'm only on my third treatment.
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Daniella, I take L-glutamine also. How are you taking it? I was putting it in water or food at first. Last week I started mixing it with orange juice because it tasted better. But that did a number on my stomach (cramping, loose BM) so I had to eliminate the juice. I've been putting a little Vaseline inside the nostrils because the skin is so raw from all the nose blowing. I'm using the saline spray but still getting bloody nose occasionally.
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Good Morning Ladies,
I took vitamin B6 from the very beginning. I thought I was going to dodge neuropathy. It started slowly around mid-point. Taxol is a powerful yet excellent drug. Someone wrote on the forum a while ago that she was 90% neuropathy free, but I believe she was around 6 months or more past taxol. I think it is temporary, but in some people it will take longer and some people it will be a shorter period of time to get relief from the numbness. I also have numbness on the tip of my tongue. Can you believe, yesterday we went to Costco. I took a sample from the person giving out the food from the microwave. I burnt my tongue! That's all I needed - ugh. I have my appointment with the neurologist next week. We'll see what he says. I also must add that I have 3 bulging disks in my neck. I doubt it, but you never know, that may be causing the numbness in my facial area. Plus the dry run in radiation, turning my head to the left and raising my right arm above my head, caused my right shoulder and down 5 inches into my arm to be numb. I'm just one numb lady!
A friend of mine, who is a cancer survivor of over 30 years, gave me this idea and I want to pass it on to you all: I made a donation in honor of my breast surgeon and another donation in honor of my medical oncologist. They were so grateful. One sent me a beautiful letter and the other called me to personally thank me. Both explained about breast cancer and how far they have come. It took Revlon to donate 2.4 million dollars to get our Herceptin through the FDA! God bless Dr. Slamon, the oncologist from CA for developing this wonderful drug! In an oncologist report, I read one of the oncologists predicts soon it will be the end of her2. How wonderful will that be.
I don't know how the weather is by you today, but in North Jersey today, it is cloudy and supposed to be 80 degrees.
Hang in there everyone. These are just bumps in the road on our journey.
Mary
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Hi,
The only med I was asked to stop taking was Co Q-10 during radiation. I am going back on it this week. I took B6 but still had some neuropathy which is almost gone.
I was able to borrow a copy of the movie about Herceptin and Dr. Slamon, Final Proof, from a local library. It was very interesting. It takes a long time for a new drug to get approved and Herceptin almost didn't make it because of the cost. Genetech was going to back out but private donations and Revlon kept it going. At that time they were using it for Her2+ that had metastasized.
Even at every three weeks I still have the runny nose. At least it isn't bloody anymore. I also have major joint pain that started about two weeks after Taxol/Herceptin. It is really painful but docs tell me it is fairly common and should ease up at some point.
Saline nose spray helped my dry nose.
You are all doing great! It is tough but we are stronger than we think. I never thought I could get through it all but I did.
Dee
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Hi Ladies,
I first want to tell you how brave I think all of you are! I have been surveying Mary since I found this forum. Mainly because she and I are from NJ and she is also going to MSKCC. Now Daniella is also on my sights!
You are amazing Mary, good luck with the rads.
I was dx in Jul and had a lumpectomy in August. A day before my post-op in NY my husband took me up to the Delaware River to enjoy the day with our dogs to get my mind off the C. I slipped on the gravel and fell down the hill tearing off my left shoulder (yes, I was holding my chest to protect the surgical site)!
So now I have a reverse shoulder replacement. I go to PT three days a week trying to get use of my arm. They just did an echo this past Wednesday but almost could not because I can't roll on my left side. Yesterday, I came down with a case of Shingles. Yes, on the left side. Thursday of next week I am scheduled for a port. I am scared to death. They will have to put it on the right because there is no room left on my left! The ortho surgeon said the radiation will ruin the prosthetic. The BC surgeon in NY said maybe they can do a partial breast, but the Oncologist at Basking Ridge wasn't as confident.
Help!! Please give me some reassurance that this too shall pass! I really don't know if I can get through this. I am (was) an active 64 yr old, fairly healthy. Now I have pain from an artificial arm, pain from shingles, nausea and D from nerves about chemo and that stupid port going in my neck and chest. I will never get out of the recliner and back to my bed!
I feel ashamed complaining, as I see so many of the women on this forum that have far worse dx than I do. That is why I chose stage 1 to post and ask for your help.
Nancy
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Nancy,
Sometimes complaining is the only thing that makes me feel better!! I can't speak to all of your concerns, but I can to some first: I have a port. many of the women on this board do not. My veins are not the greatest which is why I chose to get a port. If your veins are okay, maybe ask your onc about not getting one. The procedure was not terrible tho if you do end up getting one. I slept in my recliner until about a week after getting my port. Now I am laying in bed typing this on my phone
Chemo sucks, no two ways about it, but fortunately the chemo we are getting is a lot easier than most.
You will get through it. Chemo was the one thing I was most afraid of and tomorrow marks my last one!
Good luck to you and all the ladies on the board!
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Nancy -
I am so sorry to hear about your fall. You will heal everyday and it will be behind you. As we all go through this journey, we will get little bumps in the road.
I would ask, as Lynn suggested, if you really need a port. I didn't have one and so far have never had a problem. I was terrified of chemo! When they called my name, I wanted to jump out the window! LOL Then I remembered what the girl said when I signed in, after I told her this is my 1st chemo and I am scared. She said, most women coming in to get their 1st chemo treatment are so scared, but when they leave, they are pleasantly surprised. I was pleasantly surprised, as you will be too! They will give you pre-meds. Some of us experience minor se's from the steroid, like pimples. The great thing about the steroid is it gives you this wonderful energy the next day - for me, it was 2 days. Some people have a problem sleeping.
Chemo - your hair will most likely start thinning after treatment #4. Who cares - it grows back! I got a wig for when I go out and a bandana when people come over, but I go topless when no one is at home. I never got fatigue. I think I owe it to walking on my treadmill every day for 30 minutes. In addition, I drank about 8-10 glasses of water a day. I took vitamin B6 to ward off neuropathy. Sorry, that didn't work (or maybe I would have had it worse). I started to get a little numbness at mid point around my mouth and lips, then my feet and hands, now areas of my face. My MO had me go to the nearest hospital to rule out anything neurological - MRI and CT Scan was negative. Seeing a neurologist at MSK next week. I also follow up with my own internal doctor and cardiologist here in NJ. They all feel it is from the taxol. Taxol is accumulative, but it is really not terrible. The chemo nurses will watch you like a hawk your first few treatments to make sure you don't have any reactions to it. If you did, you would get another type of chemo that works for you.
Not to worry, you will be fine. I am now on herceptin only. It's been 4 weeks since my last taxol infusion. Everyday is better than the last. You will be fine along your journey, as we all are.
(((Hugs)))
Mary
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Nancy, I'm so sorry to hear about all you have been through. You have found a good place here, though, and we will try to help you along the way. I hope you heal, that physical therapy helps with the arm and shoulder, and that your case of shingles is a mild and brief one. I started out the year by fracturing my right wrist (of course I AM right handed!) and had to deal with a cast and physical therapy. My last PT session was two days before my biopsy and then this adventure began!
I was completely overwhelmed when I got my diagnosis and had a general idea of what treatment would be. I would wake up in the middle of the night thinking I can't do this! I had to have two lumpectomies to get clear margins, but thank goodness, we did finally get them and I had no node involvement. I did have a port placed because for each surgical procedure I had there were difficulties getting a good vein, and the chemo nurse also assessed my veins and recommended the port. I'm glad I have it. I was slightly uncomfortable for a few days after the port placement but did not have any real pain. Now I am hardly aware that it is there. Some people are doing just fine without the port so it is up to you and your medical team to decide. I, too, was terrified of chemo but have found TH to be very manageable. I am halfway through the 12 weeks. I have had fatigue, some mild digestive issues, breakouts on my face, drippy and sometimes mild bloody nose. The week after my 1st treatment I had body aches but those have lessened to almost none. I have been able to manage all side effects quite easily with medication, diet changes, rest and exercise. If you didn't know how thick my hair used to be you would think I have a full head of hair now. It continues to shed and is much thinner so we'll see how much more goes in the next six weeks! I have a wig and scarves ready when I need them.
BC is an awful thing to have to deal with but we are lucky to have this treatment available. It is easy to become overwhelmed but deal with what is in front of you without getting too far ahead of yourself. I also started to think that because others have more difficult diagnosis and treatment that I shouldn't "complain" but I ended up getting very depressed and feeling alone. Please ask for help when you need it. This too SHALL pass!
Sending hugs and prayers that things will get easier for you!
Sandy
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Nancy - glad you found us. I'm only past my third treatment, my fourth is Wednesday. A little fatigue, some digestion issues, sore nose and sore throat which is easily cured by gargling with warm water and salt. I broke out with terrible acne after my second infusion but it was steroid related - and sleeping on a satin pillowcase just exacerbated it. I wear a satin cap at night now. I'm cold capping so I just keep looking for hair thinning on my body. Nothing yet.
MSK in Basing Ridge is really great. You wait forever so just be patient. I've liked all the nurses except the last one was a little flighty. She didn't tape down my IV or something caused it to dislodge during my premeds I look down and saw a ping pong ball shaped swelling. Meanwhile, she went out to lunch luckily my nurse from the week before was there to save the day. Other than her everyone is great. Well, my first nurse was a low talker and we could barely hear her but she was nice.
You'll do great. We all will start taking l glutamine powder and b6 for the nueropathy now. 30 mgs of glutamine - split it up throughout the day. Mix it in some juice or food. I take it like a shot with water its gross but trying to stay ahead of the SEs if possible.
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Lynn, I'm thinking of you today on your last chemo day! Fantastic! You were one of the first people I "met" here and I've appreciated all that you have shared. We don't live too far from one another so maybe one day we can meet and celebrate having gotten through all of this!
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Thank you for all your words of encouragement! You don't know how much this helps me.
I need the port because the onc nurse told me the chemo would fry my veins. Right now my one good arm is totally black and blue from hit and misses ( mostly misses). I guess I should be thankful that there is such a thing as a port for people like me. (But I'm still scared to death of the installation!)
Please keep writing about your experiences, it truly gives me a window of what to expect and not be as frightened.
I wish you all a swift and pain free trip to the light at the end of the tunnel!
Thanks~Nancy
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Nancy, your shoulder issue sounds very painful. I hope they can figure something out for you that doesn't harm the shoulder replacement. Radiation involves holding that arm over your head, which sounds like it might not even be possible. As for the port installation, different doctors/facilities use different methods, but for mine I was given propofol and was completely out. Unlike anesthesia you breathe on your own with propofol. When I woke up I was in the recovery room and everything was fine. Check with your surgeon to see what they plan for you - I am glad I was "out" for the procedure. I had chemo using the port the very next day. It was not a problem at all, because the place they access the port is not directly under the incision.
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Lynn - Congratulations on your final chemo today!
Checking in: My first radiation treatment was today. Not a big deal at all! Even my shoulder didn't hurt when I rose it above to hold on to the little handle - probably because it is numb! LOL I put the cream on after the treatment that the Dermatologist prescribed and will do it again tonight.
My 2nd Herceptin only treatment was today. Done in 30 minutes - no pre-meds!
Went for an early dinner in NYC - right across the street.
Things do get better!
Mary
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Hi ladies. Good to have us all on here! I am new to this forum but want to say hello.
Lynn, oh happy day for last chemo!
Nancy, hang in there. We'll all help you. Although this is my first posting on this topic, I "lurked" around these ladies' postings for a few months and am truly grateful to have had this forum to lean on. It really helps. I found it most manageable to focus on one week/one infusion/one procedure at a time so I didn't get overwhelmed with all the "what's next" and "what if" questions.
I am due for my 12th T/H infusion this week if my WBC count holds steady. I have had some mild digestive SEs through this but mainly have just felt tired and slightly nauseous. I walk 6 days a week; for me, the light exercise really helps with both the fatigue and the nausea. Oh, and then there's the steroid acne, as others have mentioned. Haven't had any problems with neuropathy so far but take B6 regularly.
My hair started thinning around Week 6, to the point I felt like I was spending a ridiculously long time "arranging" bits of hair over very thin patches.... so my husband shaved it off for me. I can't be bothered with covering my head. Being bald is not so bad (it is a bit drafty!) but I still have to shave my legs every day and I find that extremely unfair... bald, pimples, AND leg hair? Where is the justice, I ask you?!
Wishing all of you well and grateful for all of your support.
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Hi Ladies,
Wonderful news Mary! It is encouraging to hear your first rad was OK.
PatinMN- they said they would give me "twilite" anesthesia. I hope they decide to just put me out. I will have nothing to say to them during the operation! Can you feel the tube in your neck? I think that's what will drive me insane! When they left the clip in my breast after the biopsy I thought I'd die! On the way home I told my husband "stop the car, I can't stand it. It's pinching me!" He stopped the car and I reached in to find the ice pack pinching my breast! (Very good imagination I guess!) that's why I will be using a lot of the anti anxiety pills!
Marineswife I believe you are right..one day at a time. I have to worry about getting through the chemo before worrying about how i'm going to do the rads. Actually I have to worry how I'm going to get through PT with the chemo. Nothing's simple.
Thank you all for supporting me.
Nancy
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Nancy, yes I could feel the tube in my neck - it doesn't hurt, just a "feeling". I couldn't stop myself from touching it frequently (there's a small bump there where it makes its turn). Was glad to have it, but glad to get rid of it after finishing herceptin. The removal was easy - local anesthetic, didn't feel it at all and was chatting with the surgeon and nurse the whole time.
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PatinMN, the nurse called today and told me to take my anti anxiety pill and when I got there they would give me more ! )
I actually don't know why this tube is giving me such grief when I have at least five pounds of titanium in my shoulder now!
Onward>>>>>
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I had my 4th infusion yesterday. My iv had to be moved to a larger vein - the same vein in my left arm that they have used now for 3 infusions. I did fine for my second infusion with a smaller vein in my right arm but the nurse told my husband I should get a port. I'm adamant that I do not want a port. Anyone?
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Hi Daniella,
My lumpectomy was in my right breast as well. They only used my left arm. They didn't use the arm that is on the same side as the surgery not even for bloodwork or blood pressure. If the larger vein is on the left arm and there was no problems, why not just use it all the time? They were using my nice large veins in my hand until Hackensack University Medical Center collapsed it - ugh. So they used the vein in the crease of my left arm. So far it's still working well even though I now go every 3 weeks for Herceptin. Good luck.
Mary
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