Questions on bone pain and hot flashes
 

Hi ladies
I finished 4 DD of AC and have only had one period 1 week after first treatment. The hot flashes have started and are miserable. I am not a hot person! Give me snow and cold over sweating any day. My onc just put me on Effexor xr. It is for depression but he said it has a great effect on hot flashes. So far it is helping, but how long do hot flashes usually last? 3months or 3years?
The second question; I started Taxol and Herceptin on Monday and on Wed. started with painful leg and back pain. Not enjoying this. I just don't feel like even getting off the couch. I seemed to bounce back better on the AC. How long does the pain stay. Does it ease up any time between treatments or should I count on feeling this way until the last treatment is over?
I will thank you ahead of time for all your input. You all always seem to help me understand all this mess. Have a peaceful day, Kriss

Hot flashes and Taxol pain
 

Hi Kriss,
Congrats on finishing A/C. I am also on Effexor XR. Has helped with hot flashes but I still have some. I have no idea how long they last, I have been dealing with them for about 2 years. Not what you want to hear.

I just finished Taxol and did not have much bone pain. What I did have only lasted a few days and Tylenol helped. My onc said if pain is to bad Tylenol #3 really helps. You may want to consider that if your pain persists. You can do this!

Good luck to you.
Donna

Kriss,

There was some discussion last fall regarding hot flashes that might be helpful:

http://her2support.org/vbulletin/sho...ghlight=80%27s

Hi Kriss


I had bad leg pain on Taxol. It is a side effect. It seems (to me) almost electrical. It was bad. I will say that moving around helped more than laying around but I still didn't do much. I thought (overall) that AC was worse but Taxol was no treat. I am not sure how you are doing the Taxol as I didn't look at your signature. I did Herceptin after chemo and not with the Taxol (but your bone and leg pain are from the Taxol and not Herceptin). I did taxol dense dose every 2 weeks. The pain was basically gone by the next treatment. Also, I was very allergic to the emulsifier in taxol (it is the emulsifier in it that folks are allergic to and not the taxol active) so I had benadryl IV the whole time and pills of it every 4 hours for the first 24 hours. My lips would swell and my onc gave me an epi-pen just in case so in many respects, taxol was worse for me because I worried so much about the allergic aspect. Since you did not get this the first time, it will not be a side effect.

I do feel your pain (no pun intended). Take Advil LiqCaps. They do help alot.

The pain tends to subside greatly after about 4-5 days.

Hug to you

Hi Kriss,
Happy to hear you are finished with AC. Sorry to hear of your Taxol pain. I did AC every three weeks for 4 cycles, started Feb '06. I then did Taxol every three weeks for 4 cycles. The joint and muscle aches and pains I had with it were just terrible--felt very deep and severe. They set in about 48 hours post-treatment, and lasted for about 4-5 days. My feet and legs were the worst--hobbled around like I was eighty! I tried Oxycocet, but that made me nauseous. I finally got onto a pain control regimen of 1/2 Oxycocet and two extra-strength Tylenol with Zofran, every fours hours at first. Start the pain meds before the onset of symptoms to get a handle on it. Talk with your Onc nurse or doctor about your symptoms, and maybe they can recommend something for your pain management. I still have joint and muscle stiffness and aching sometimes even now (finished Taxol Aug '06) and wonder if it is remnants of Taxol or part of the Herceptin effects?
I started with hot flashes about 6 weeks after I began AC, and still have them. Haven't had a period since April '06. Onc also suggested low-dose anti-depressant if I found the flashes to be unbearable, but so far I've avoided adding any more drugs than I have to.
Hope you can find some comfort from the Taxol pain. It's just another round of this fight we are going through. Hang tough.
Peace and Blessings,
Karen

I feel your pain!
 

I am doing Taxol for the second time and it sucks! My first round was two years (4 rounds of AC then 4 rounds of Taxol 3 weeks apart). I remember waking up in the middle of the night in the worst pain. My doctor gave me Vicodin which made me sick and the Darvoset. The Darvoset worked but I only took it if I was in severe pain other wise I took Advil or Motrin. After 2 treatments my husband broke his leg and couldn't walk or drive so I had to deal with the pain (I had a 7 month old at home!) I would get my treatments on Monday and usually work Thur - Sat. This time around I am getting the Taxol every two weeks along with Herceptin. I get my treatment on Thur and go to work after and work Friday. It is hitting me on Saturday and Sunday pretty hard but I am able to work through it. I agree that moving around is better than just sitting. I do have one toe that is still numb and sensitive to cold from the first round and my onc says that is normal. Hang in there you are on the downhill slope now!!!!!!!

Stephanie

After just finsihing my last taxol, I agree with everyone else about the leg pain. I also had other pain, my collar bones, wrists and feet. The numbness in my toes and fingers startred about week 5 or 6. I had my last treatment on Tuesday and I feel like I am coming around again. I do always feel worse at night. As far as the hot flashes, I hear you!! They are driving me crazy. Couple of more side effects that bothered me on Taxol was bloody boogers and acne. The acne is the one that really has got me down in the dumps. I hope it is from the steriods or Taxol and not Herceptin.

If I got through this you can too. I am a complainer and do not tolerate pain well. On Friday I told my parents I was giving my husband a break and they could spend the day hearing me moan. I look forward to the day when you are done. I am sending white light and the permission to complain anytime you want.

Oh and then do I dare chime in to say that after the Taxol, if you begin to take Tamoxifen, the hot flashes only seem to get worse! I too have bone/joint pain. Mine began after my ACT was finished and on Herceptin/Tamox.

I was hoping to participate in a Mayo trial to deal with the hot flashes by taking Celexa but it seems I am not fully menapausal so will not be able to participate.

Bobbi

Still have hot flashes after 1.5 years. I'm Ok with it. I dress in many layers and routinely take everything off and put it back on again, and repeat procedure 10x per day or as needed.Cuts into sleep time a little, but I'd rather be hot than cold.

Before taxol, my onc nurse said to take daily B-6?. I didn't have any pain during TX. After tx, my toes hurt, but who knows?

Neulasta can cause similiar pain. Good luck. Bev

I forgot to put in my previous post that I took a B Complex and Glucosimene? during Taxol. It really seemed to help with the pain.


Stephanie

Yes, try the B-6 (50 mg twice a day) and Glucosasmine. Glucosamine is a powder and I took a tsp in juice or water 3 times per day. I think it really helped with the numbness and tingling, tylenol helped with the pain.

As far as the flashes, I'm a 3 year survivor and still getting them. I do have to say that they have gotten less frequent and less potent this last year so I'm sure they will for you also.

Hang in there, we know it's tough but you have all of us here for support.

Donna

my 2 cents worth...!!! joint pain started with herceptin and arimidex...better now... As for the hot flashes...whoa yeah...sometimes they are so bad it is like a mini-anxiety attack!!!

Hi Kriss:

I've had a tough time with hot flashes too. I'm two years out. My doctor also offered me Effexor at a very minimal dose to try to deal with the hot flashes.

I refused Effexor because she told me that it was an anti-depressant being prescribed off-lable to combat chemo related hot flashes because they couldn't be controled with in the normal fashion with estrogen. She also told me that if I started taking Effexor I should be aware that this drug was minimally addictive, and I would have to wean myself off of it after I was finished with it.

She told me that some of her patients had strongly advised her to warn new patients about this because apparently that it was harder to stop (at least for some people) than than is strictly apparent in the warnings. I believe that our health clinic is involved in some way with a study in this regard, and my Onc heads up the clinical studies department - so she might have some inside scoop that isn't ready for publication yet.

I've basically had to get used to dealing with these rotten flashes - I get them about once an hour.

Merridith

Thanks Ladies for all the info. I guess the hot flashes are just something I have to learn to live with to a point. The Effexor seems to help and I will talk to my onc about weening myself off when the time comes. I think I am benifitting from the anti depressant part as well. The last several months have been rough. Dad died in April, husband dx with thyroid cancer in june, uncle and grandfather died in Oct. and I was Dx in Dec. Never felt like I had a chance to catch my breath and now I seem to be smiling a little. So I think I will continue to take it for a while.
I will also try the B6 for this round. When I had my weekly Herceptin on Monday Onc said he would also give me something more for the pain. But I'll see how the B6 works first. Once again thank you all. I can always count on all of you, Kriss

Effexor XR Alert - for Kriss and all of us
 

Hi Kriss-
I urge you and anyone else taking or considering taking Effexor XR for hot flashes and/or depression to Google "Effexor withdrawal" and research this drug.
This is a dangerous drug. I was put on it after chemo for the hot flashes. Yes, it did reduce them slightly but I still suffer terribly. Last December I was rushed to hospital in a very bad way; I didn't know what was wrong with me. At the hospital they couldn't figure it out either. Since I've learned about Effexor, I've learned that it was this drug that put me there. I won't go into the details of that, but let me share this. For me and a lot of others, according to my research on the internet, the drug lasts about 23 hours; after that I begin to have "electric shocks" or as I call them "short circuits" in my brain. My mood also can get very black very suddenly. This is my reminder to take the Effexor. If you miss a day, you will pay. When I ended up in hospital, I had missed 3 days. This drug has also caused me to gain 20 lbs. literally almost overnight (others have reported as much as 50 lbs weight gain - how healthy is that???) I was on Prozac for 5 years because of PMDD (pre menstrual dystrophic disorder which defined is PMS off the scale) and if I missed a few days it was no problem, so of course I didn't realize Effexor would be any different. I am now weaning myself off this drug, cutting down by 1/8 every 5 days (I'm on 150 mg) and so far so good.
Did you know that one of the "rare" side effects is that some people have to be on this drug for life, they can never stop once they've started!!? Please, please, anyone on this drug, Google "Effexor withdrawal" and learn what your doctor has gotten you into, get the real facts from the people who have experienced it. Knowledge is power.
You are an incredibly amazing group of women and men, so courageous, brave and very intelligent. I am regularly humbled and enlightened by you. I wish the very best for all of you.
Love,
Jade