Taxol and Herceptin only for stage 1 HER 2 positive?
Comments
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thanks for the encouragement, Marie
I really feel like I hit the wall a week or so ago - very fatigued. I have slacked off in staying active, which I'm sure doesn't help. I have 2 more tx to go before switching to Herceptin only, and I will never forget my end date, either - Hslloween Thanks for the info on how long the Taxol lingers. 0 -
Hi Marie, so glad to hear that things are going smoothly for you! Can't wait to get to the end of the weekly TH. #11 today so I'm almost there. My daughters plan to visit in a couple of weeks so we can celebrate the occasion. Have you continued to take the B6 and L-Glutamine after finishing Taxol? I haven't asked the doctors about that, just assumed it was during active treatment only. I really caved in to the growing fatigue last week but also feel better and have more energy with exercise. Yesterday I went out for a walk but it was so windy that I felt like my head was going to blow off! I also have a treadmill so that makes it easier to stick with walking regardless of weather.
Dee, thanks for your input on the fatigue. I look forward to the day when I realize I have energy again!
Kerensa, Christmas Eve will be even sweeter than usual this year knowing that you will be done! Hang in there!
I'm turning around my mental funk and feeling more positive today. It is a marathon, but I know I will make it. And, I don't want BC to turn my normally happy self into a cranky person! My sister is coming tomorrow to visit for a few days. Always a lot of fun and laughter when we are together. That's the real medicine I need.
Hope you all feel well today.
Sandy
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Hi Sandy -
Once I was done with taxol, I stopped the B6. My MO said, I didn't need it any longer. I have neuropathy. So I went on neuropathy.org and it said too much B6 can actually cause neuropathy. I started to wonder if I shouldn't have taken it in the first place. I take a multi vitamin now Centrium Silver. I tried taking a low dose asprin again like I did before TH, but I got a bloody nose. It probably doesn't agree with the Herceptin.
How exciting so many of you are coming to the end of the taxol journey!
Good luck!
Marie
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Thanks, Marie. It can sure be a tangled web of what causes what side effect in this journey!
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Sandy Loves Lucy - my chemo nurse told me to continue with the glutamine and B6 for a few weeks after finishing taxol. I ran out of glutamine and didn't want to buy any more - I was tired of it! But guess what - about 3 weeks after finishing taxol with very little sign of neuropathy, one of my big toes got completely numb. After a few months it got better, but then in August of 2013 (8 months after finishing chemo and a few months after I thought it had resolved) I spent a full day walking around the Mall of America, and the numb big toe came back. It still has not completely resolved, although it is better. Moral of the story - if I were you I would continue with the glutamine for a few weeks after finishing. (I did have some B6 left and continued with that, but it didn't prevent the numb big toe.)
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Sandyloveslucy - only one more to go!!! God bless you! You're almost at the end. I hope today went well and the SEs are the same, not worse (I think that's all we can hope once we get past the halfway mark)
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Well completed #4 today. 1/3 of the way done! Last week went better, my hubby was off for a week's vacation so it he kept me grounded. Still had the SE's starting on Wednesday thru Saturday, fatigue, headaches, body aches, and icky nose. I also have acid reflux normally so that was much worse last week. I have to add an over the counter med "Ranidine"(zantac) to my daily . I do take Lorazepam to help sleep and to ease the tummy, just on the bad days.I'm still hoping my hair hangs on. I have thick hair and it is shedding a lot and I have the achy scalp. Kind of like when you wear a really tight ponytail and take it out, you scalp kind of aches for awhile. My nurse says not all lose their hair with Taxol, if you have thick hair it just may thin a lot. So, we will see how long it holds out. I will still look into a wig, to find one I like and see how long it takes to get.. just in case.
I'm trying to be more positive and taking things one day at time. My goal this week is to get some walks in as I do believe it helps to keep moving. I have always been one to think ahead, planning for the future, perhaps this is gods way of reminding me to just live in the now and take things as they come.
One good thing of all this is the support I'm finding in family and friends I didn't really expect. My good friend went with me to my treatment today, we also work together in the same department. I have a great team of co-workers(10) that wanted to assure me they have me covered and not to feel bad if I need to take time off. They are all wearing pink bracelets of support and surprised me with money for 3 of my co-pays for my treatment($90). I am okay right now financially, but it was such a sweet gesture it brought tears to my eyes.
Kerensa good luck this week on the new drug, I hope goes much better for you.
It is great to have a place to vent and share, as everyone here is in the same battle.
Wishing you all a great week.
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Sandyloveslucy, I'm so excited for you that you only gave 1 more to go!
Myturn, what a great thing for your coworkers to do for you! That's so very sweet.
Thanks for all the well wishes ladies
I cut my long hair off today in preparation of my hair loss. I'm hoping yo make the transition easier on my hubby and 2yr old.
Hope you all have had a good Monday
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Patin, thanks. I spoke with my chemo nurse yesterday and she told me the same thing, to keep taking the B6 and L-Glutamine for a few week after the last TH treatment. I will ask the doc when I see her next week, too. I hope that your symptoms will disappear soon.
Daniella, thanks. You are right behind me! Twelve weeks of weekly chemo sounds like an eternity at first but the weeks really do go by. I hope you continue to get help with the little one so you can rest when you need to.
Myturn, congratulations on hitting the 1/3 mark! My side effects have been very similar to yours and predictable in pattern for the week after chemo. I too had very thick hair to start with. I've probably lost about half but the shedding has been very even so my head is still covered. We may be among those who don't have to buzz it off. The mental part of this can get difficult. Exercise and social contact has helped me. Hard to do when one is feeling down but keep at it! Your co-workers are gems! I tend to be a workaholic and had to release the illusion of control and just be in the moment through all of this. I have discovered that taking a nap when I need one can be a lovely thing.
Kerensa, I'm sending hugs your way. It must have been difficult to cut your hair. I kind of wish I had cut mine shorter at the beginning. When my sister gets here later, we will talk about whether or not I should cut it shorter. She will be brutally honest with me, in a loving way! Either way, I plan to wear the hot pink wig one of my daughters gave me to my last session next week.
Several of the nurses and staff came up to me during my session yesterday. They said they were talking about me during their meeting and were so happy that I have done so well on Taxol. The side effects can feel daunting at times but I'm am so grateful that I qualified for this protocol. ( my nurse did encourage me to take Immodium for the big D though! Can't just power through everything!)
Have a great day!
Sandy
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Woke up this morning to my hair shedding 3x as much as last week or just yesterday. I don't think even my thick hair will be able to make it thru 8 more weeks. Feeling very bummed. I was just hoping to be one of those that didn't lose it all.
On the Brightside, I already have an appointment to look at wigs today. My daughter(18) will go with me to make sure I pick out something that 'looks good'. We will make a day of it, I have always wanted to have long wavy hair starlet hair, or even "Jen" hair. I could go way from my straight dark brown hair with highlights and look at something bold maybe with that dark red tint? All the possibilities....
- Hats will be challenging I have yet to find one I look good in... Its another one of those things that is out of my control, this is something I cant stop and its obviously going to happen, so all I can do is make the best of it. 0 -
Myturn, you have a good attitude about it all. I'm shedding a lot right now, too. My sister and I had a detailed discussion about my hair yesterday. The current plan is to get by with headbands and hats for now because I have so much thinning on the top of my head. But there is still some length left to stick out from under the head coverings. Great idea to have your daughter along for the wig shopping. You need someone who will give an honest opinion. My sis came with me when I got mine and it made it almost fun! I'm sure you will rock whichever look you choose. Good luck!
I hope you are feeling well with few SE's this week. Hugs, Sandy
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Thanks Sandy. Sounds like your dealing with the same thing! It does help to have someone else's opinion, especially a sister as they usually don't hold back! We got a wig picked out today and ordered. Some look so awful, I am hoping we picked a good one. One good thing about where I got it from is you don't have to keep it if you don't like it. I need to look for some kind of hat or head wrap, next week when I pick up the wig. I'm optimistic I will still have hair by next week. I can see why some just shave it off when it comes out so much. I barely touch it and I have a bunch of hair fall out. Part of me is curious if I can comb myself bald..
-But it was nice spending the time with my daughter today, we went to lunch afterwards. Just got home a few minutes ago, we got back just as the SE's are kicking in this afternoon like clockwork. So I'm going to take a nap!
Hope everyone's day is going well.
Beth0 -
ladies, I bet you look beautiful! Glad you have plans in order
I started my new drugs today. Everything went great! I am now at home and exhausted but thankful o have 1 out if the way. Guess I'm not on Taxol anymore, but Abraxane us a sister drug, so I'm gonna hang out here if that's ok with you all
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Kerensa, I'm so happy that things went will for you! Don't you dare leave us!
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Hi Kerensa.
I am past taxol for almost 2 months now. I go to MSK in NYC and met several women who had an allergic reaction to taxol. As in your case, they were put on another drug like you. You will be fine. The weeks go by quickly. Before you know it, you will be like me telling others to hang in there!
Hugs
Marie
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I need help with dry mouth. Biotene is not working for me. I have a persistent cough which I am beginning to think is because of my dry mouth. Do you ladies have any solutions? I'm going crazy! I cannot suck on candy all day or my dentist will have a conniption when this is all over
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Kerensa - I drank 8-10 glasses of water a day. I kept a record! That may help. Biotene makes gum, cream etc. You can check Amazon or your drugstore for more of their products besides mouthwash.
Good luck!
Marie
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Thanks MarieNJ! Going shopping on Amazon right now!
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1/12 Taxol plus Heceptin started today. I survived and they gave me a flu shot too. Very thirsty and feel fatigued. I have a strange metallic taste in my mouth but no big deal.
If u r debating getting a port-take my advice-do it. It was so much easier to get things going.
There is some debate between my chemo nurse and BC/BS case manager re taking Zofran-case manager wants me to take it tomorrow and nurse wants me to try to avoid unless necessary due to Constipation.
My bladder is on overload. Yikes!
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I met a woman who has been on Herceptin since 2005. She said she has tumors that are inoperative and the Herceptin keep them from growing. Anyone know about this?
Dee
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Dee, my breast surgeon's nurse was dx something like 20 yrs ago and has been Stage IV for 12 years. I believe she has been on Herceptin for at least 12 years. She is living a full, healthy life.
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Ladies,
There are so many successful stories of the use of Herceptin. For all that don't know, there was a movie out called Living Proof about Dr. Slamon, an Oncologist, who developed it. It is worth watching. You can order it from the library or on Netflix. This is one of the best drugs developed.
Marie
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Yippie I'm half way from hell treatment 6 of Taxol 7 of herceptin. Having terrible side effects. I feel like the poster girl of side effects. Tired beyond anything I've every had, light headed when standing up from super low blood pressure,bloody noses with huge clots, funny taste in food, numb finger tips and feet, terrible rash on arms,patchy dryness on face, hoarse voice,acid reflux,bowel issues,hair loss,mouth sores and of course low blood counts. Now a new one trouble swallowing food can get it down but it hurts. I see my MO every 3 weeks will see her next week and we have skipped one week due to the low counts but now I give myself shots for before my treatments, I'm just a mess I can deal with the se but the tiredness is just the worst can't even go to the corner store without feeling I ran a marathon. I know its only the treatment and most should go away when i stop the Taxol but my Mo is aware of the se and we need to do something with the tiredness any one have any ideas how to get some pep.I just want to get the treatments over with doc says may have to tweek the treatments so I hope some of the se will get better. Had to rant cause I can't sleep from todays benadryl with treatment.Thanks for this site it has helped me find some helpful tips.
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Sweetbanker,
I had finished taxol on Aug 25th. I can tell you that I drank 8-10 glasses of water which helps to flush out the toxins. Taxol dries us out! - drink drink drink. This recommendation was advised by my MO. Also when I was halfway through, I asked my MO if she can lower the benedryl. She did and it made a big difference in the way I felt. I also walk 30 minutes each day on my treadmill. It helps with fatigue. I continue to walk each day post taxol.
As for the rashes, my MO referred me to a Dermatologist Oncol. He prescribed a cream to get rid of the rashes. The rash can come from the steroids. It worked for me. The Dermatologist also gave me a cream when I started my radiation journey.
I have neuropathy too. I had it all! My MO referred me to a Neurologist Oncol post Taxol. Neuropathy started only minor midpoint, but progressively got to my hands, feet etc. I also have it in my face! I don't have pain, only numbness. He prescribed Lyrica which may be helping. I do feel a difference. I am on a very low dose. So he may increase it, but he said "time" is on my side. Time is the healer of most of these chemo induced annoyances.
Taxol is accumulative. When you finish taxol, some se's go away right away and some take "time". Take notes each week and report it to your doctor as you go along.
I also should mention, I asked my MO if she could lower the steroid when I got to midpoint. My MO lowered me by 2 mgs until I got to 4mgs at the end. I started out with 10 mgs.
Good luck to you - you are halfway through your journey!
Hugs
Marie
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Thanks MarieNJ and congrats on finishing your Taxol. Yesterdays treatment we did 2 bags of fluids and I feel much better today. Going to make a better game plan for my fluids I think I'll go back to cucumber water to get a better taste. Thanks again for the tips I'll talk to her next week. Are you continuing with the herceptin I'm having a year but every 3 weeks and radiation too after the Taxol.
Hugs
Kathi
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Wow - so much for the easy chemo. I feel like Ive been hit by a bus. I didn't walk today - I could barely move around my house. Thankfully my family has all been taking turns with the baby so I'm not running after her, too. Headache, sore throat, diarrhea, nausea (this is new!), sore nose and extreme fatigue. Four more treatments to go. Praying the worst of it is just today and tomorrow - my usual SE days - and doesn't stretch out further.
Hope everyone else is doing well.
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Hi DaniellaD: My MO told me that it gets tougher after treatment #6. Hang in there! Btw, my infusion nurse told me thst someone has been coming for 15 years for Herceptin who is Stage IV and she is still going strong! TG for this targeted therapy!
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Kathi,
1 month after my taxol treatment I had radiation. That too is finished - Yay! They almost started me 1 week too soon. I reminded them of what the RO said - 1 month after radiation! The techs called the RO and the RO confirmed that I was right. So you must also be on top of things.
I continue with herceptin every 3 weeks to complete 1 year from the day it started. I will most likely be done the beginning of June.
Good luck and hugs,
Marie
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MarieNJ, you have checked two big things off your list now that you are done with chemo AND radiation! Congratulations. It has been great following your progress and I'm right behind you!
I had a nasty cold over the weekend so it wasn't clear if I would get chemo yesterday or not. My counts were ok and I felt much better so it was a go. #12 of 12 is done!!!! I thought I wouldn't start the dose dense Herceptin for three weeks, but I will be going in next week for that and then move to the three week schedule. For those just starting TH, the weeks really do move along faster than you think they will. Yes, I had side effects but they were manageable. The fatigue got rough for me in the last three weeks and I am hoping for a little energy rebound between now and the start of rads.
I had an amazing surprise yesterday. My daughters put together a video that included clips from my family and closest friends. Since there was no bell to ring at my center to celebrate the end of chemo, my friends and family did it for me. Each person told me how proud they were of me and rang some sort of bell. It was everything from a bell on a cat's collar, doorbell, cowbell, jingle bells, etc. Of course I sobbed while watching it! I am so lucky to have been offered this treatment and to have so much love and support carrying me through. All of you here are a huge part of that support and I will always be so grateful!
Hugs, Sandy
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minivan, thanks! My mammogram ultrasound were in May, diagnosis in June, surgery in July and August, chemo in August and rads to start in November. So it kind of felt like forever for me, too! Especially when I hear about people who had everything going In a month or so. I'm sure you are getting great care. You WILL make it"
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