Anyone on Navalbine in StageIII?

Quaatsi

Hi,

I will be starting Navalbine in three weeks. I am in stage III and wanted to connect with anyone else who might be doing this as a regimen or it is included in their chemo.  It will be a 12 week term with 9 treatments.  Thanks ladies!

Q 

Karina121293

Hi Quaatsi, I have already finished my treatment, but just wanted to wish you good luck and let you know, that I had few navelbines and they were the easiest tolerated ones for me, and the SE were a lot milder than the taxanes. Hope someone will come along and join you with the same treatment plan. Best of luck and SE free treatment to you.

Karina 

PlantLover

Quaatsi ... I did 9 rounds of Navelbine.  I was scheduled for 12 rounds (two weeks on, one week off) but just couldn't take anymore treatment and my oncologist agreed that skipping the last three wouldn't make that much difference. He recommended the chemo after I had surgery and they found active cancer in 3 nodes.  The side effects, for me, with Navelbine weren't nearly as bad as TCH but I was just plain whooped.  I had to work through all my treatments and only took time off to recover from surgery.  Lots of people do that so I'm not trying to say I did anything special.

My side effects included leg cramps, foot pain, and terrible constipation.  I also had a lot of problems keeping my blood counts up and had to give myself Neupogen shots which made me feel like crap!  I was already used to them (read HATED THEM) because I had to do the shots during the TCH.

I have yet to see anyone else on these forums that followed my treatment path.  They may be out there and I've just missed them. My oncologist was EXTREMELY aggressive.  I was also scared out of my mind, as most of us are, and would have stood in a corner everyday for hours if he had told me that it would help prevent mets.  I did whatever he suggested.

Anyway, this was my treatment path and none of it was a trial ...

1. 6 rounds of TCH (Taxotere, Carboplatin, & Herceptin) before surgery.
2. Bi-lateral mastectomy
3. 38 rounds of radiation to my chest, clavicle, and back
4. 9 rounds of Navelbein 
5. 1 full year of Herceptin
6. Ovary removal
7. 3 years of Tamoxifen (still on it) 

Hope this info helps.  Let me know if I can answer any questions for you!  Hang in there!!!!

Quaatsi

Thank you both.

Sounds like alot of treatment, Plantlover!  I hope you are doing well.

And Karnina- I am glad you are done. All well?

I am still on Taxol (weekly X12) and have  2 more infusions left. I will then take one week off and begin the Navalbine. I also had a bilateral mast. in October but I cannot have radiation, nor Adriamycin due to having previously (in my youth, 20+ years ago) been treated with CHOP and radiation.  So my Onc is being a bit creative.  I am very happy with her and her approach.  I was wondering if  weight gain/weight loss was an issue?  thanks, Q

ma111

Navelbine was my 4th chemo. I was supposed to do 3 week on one week off. 3rd week of 1st round my counts were down too much to have it. However, I went into it coming off of Taxotere and I think my body reacted that way because I have had too much chemo. I just wanted to sleep the whole time I was on it.

PlantLover

ma111 ... I really hesitate to ask this but were you Stage III or Stage IV when you were given Navelbine?  I'm not trying to offend you in any way I just haven't "met" anyone else here that was given Navelbine when they were Stage III.  I'm sorry you've been through so much and I saw your post on the Stage IV forum regarding stopping chemo. My heart truly goes out to you!

Quaatsi  ... I didn't notice any weight gain or loss with Navelbine.  Sorry to hear that you had to be treated with chemo & rads 20 years ago.  Glad your onc is being creative.  I hope you don't mind me asking, but are you unable to be treated with Herceptin?

Thanks for asking, yes I'm doing well, overall.  I'm having quite a bit of joint pain that I'm learning to live with & radiation damage that caused me to lose one of my implants and left me with chronic pain in my ribs and under my arm. I guess I can also blame some of the aches and pains on turning 50 in September but never had any of them before treatments.   Oh well, hoping it was all worth it in the long run.

Quaatsi

HI Plantlover-- Yes, I am ON Herceptin as well and will continue until next November.  

I started this thread because I too couldn't find anyone who was in an earlier stage being treated with Navalbine.  I think that when we've been on chemo for so long, our reactions are quite varied.  I know, for example, that my response will likely be different since I have been on Taxol for 3 months now than it would have been if I had not been on  any chemo.  

Ma111-- did you only go through one treatment with Navelbine or did you do a series?  Hope you are doing well now.  

Q 

ma111

I was stage IV. I was supposed to have 3 weeks on and one week off. On week 3 of the first round my counts were too low to have it. All I did when I was on it was sleep. It didn't seem to help any of my symptoms. However, that doesn't mean that it won't help you. I've heard from the onc's office that some people resond really well from it and that's why they tried it on me.

Quaatsi

Yes, I read some studies and the results were terrific.  I hope that it does work for me and sorry it didnt for you.  I guess if a sleep alot that might be OK but I do have to work... oh well!  Q

ma111

Working in such a sleepy state didn't work out for me. I was going home early a lot.

Quaatsi

OK...will note that. Did you take any mushrooms...medicinal ones?  or astragalus?

ma111

Nope, no mushrooms.

Quaatsi

I am disappointed there are so few responses to this forum-- I am thinking that maybe not too many people are on Navalbine.  will be going it alone.... sigh...  

but thank you to both of you who have posted. Q 

PlantLover

Quaatsi ... Of course I was also watching this thread to see if there were any other Stage III foks that were either currently being treated with Navelbine or, like myself, had completed their treatment.

So, I guess until we hear otherwise, it's just you and me. 

Oh ... just to let you know, I'm currently participating in a breast cancer study and I received my periodic followup call last week.  I actually took the opportunity to ask the research assistant if she was aware of any other "early" stagers being treated with Navelbine and she said that she has not run across anyone else on that drug either before or after surgery.

Who knows, maybe you and I are breaking new ground, lol! 

Hey ... even though I'm not going through the treatment right now, please let me know if I can help you in anyway.  I hate you feel you're going it alone! 

Quaatsi

Thank you SO much!   I will ask my Onc the same question you asked.  She was at a conference in December and called back to the University to tell her assitant that she had found what she was going to put me on!!!  Kinda nice to know your doctor is specifically thinking about you, even at a conference.  I think she is great and I am very grateful for her.  

but the way, did you get a bmx and if so, are you having any lymphedema issues in the arm with the nodes removed?  they took out 30 nodes in my arm-- pretty much all this is there -- don't know why the overkill!

Q 

PlantLover

Q ... yes, I had a BMX when I was kid.  It it was royal blue and had a really cool horn *wink*

Sorry, thought you might could use a smile & yes I saw you and some others talking about that in another thread.  I also thought it was odd that people were talking about bikes when I first started reading these forums long ago.

Yep, I had a bi-lateral (see  #2 in my treatment path in this thread).  They only had about 15 nodes in my axillary lymph node dissection.  I don't know why some have more than others but it seems to really vary from person to person.  Maybe it has something to do with how many levels they take.

I had a little bit of trunk & breast lymphedema.  I had a wonderful PT that worked with me when I developed frozen shoulder & she also treated me for the lymphedema.  Fortunately, it went away with just nightly massages for a few months.  I have a WONDERFUL husband and he went with me to a couple of PT appointments and she taught him how to do it.  I haven't had any more problems but he still gives me nightly massages.  I am spoiled by love!

Yeah, I'd love to know what your onc says.  Feel free to mention my treatment to her.  I plan to ask my doc why he picked that chemo when I see him next time but that, hopefully, won't be until May.

bethen

I am starting Navelbine tomorrow.  I will be having three weeks on Navelbine followed by the fourth week on Herceptin.  This is going to continue for 6 cycles.  So I am weekly now for about 6 months.  Lets post our experiences with Navelbine, I too also notice not many people seem to be on this drug.  

Betsy

Quaatsi

terrific!   I wish you the best tomorrow. Q

bethen

Going for my second treatment tomorrow.  First one was OK.  I have had some acid reflux type of symptoms, but that is all so far.  We will see how it goes and I get more and more of this drug introducted into my body.

PlantLover

Bethen ... would you mind sharing your stage?  If you don't want to I completely understand.

Good luck with your treatment tomorrow!!

How are you doing, Quaatsi? 

Quaatsi

Hi PlantLover--

Doing OK.  Am way more tired than I thought I would be this week, my week off!  Have been experiecing nausea and some vomiting which I seem to have evaded throughout all of Taxol so I am guessing all this is just the cumulative efffect. No biggie. I am just slowing down.  Am eager on some querky level to get started with Navalbine-- how sick is that??? LOL

How are you? 

 Bethen-- you doing weekly? or? how many do they have you set up for? Good luck tomorrow!

Q 

bethen

Hi....You know lately I have never even questioned my stage, when diagnosed in 2005 I was stage 3.  Then in 2010 I had a recurrance in two lymph nodes deep within my pectoral muscle on the same side that I had my mastectomy on.  Now just in Dec. 2011 there is another node that has popped up.  So I suppose that now I am actually a stage 4.  I have been getting herceptin since May 2010 and at that time I also did 6 rounds of Taxotere.  This time however they decided to give me the Navelbine along with the Herceptin.  My schedule goes one week Herceptin and Navelbine, and the next week just Navelbine, the following week off and then I repeat this schedule for six cycles.  Will see what this brings and if the Navelbine works.  Taxotere was not given again (thank god, that really made me sick) due to the fact that I already had it back in 2005 and again 2010, obviously it did not do much good.  I have also had radiation twice, and they will not do it again as the radiation fields would cross too much.  Hopefully the Navelbine will give me more time.  

Betsy

Kathleen26

bethen,

if you don't mind my asking: how did they find your lymph node recurrences?   Did you have symptoms they were investigating, or were they found on a periodic scan of some type?

bethen

Kathleen26

The first recurrance in May 2010 it was myself that found it, I noticed that right below my collar bone it felt thicker, almost as if I had a hard little muscle there.  I showed my oncologist and at first she thought that maybe it was because I was right handed and therefor the muscle on that side would be a bit bigger than on the other side,  But, I am LEFT handed and since I had no other symptoms she decided to CT it right away, so two days later I found out that it was 2 lymph nodes that were involved.  This past timejust in Dec 2011  I had a 6 month routine follow up CT on Dec 23 and found out Dec 28 that there was a new lymph node involved and so begins my journey on Navelbine.

Betsy