Need Help...anyone please!!!!

[TriciaV]

Hello and let me quickly bring you up to date. Some of you may remember me from a few months ago.... I lost my name and profile, when the idiots messed are sight up and was so busy I just got around to getting myself back on here to re-register. So I am 32 and was diagnosed this Jan 2007 of stage 3 invasive ductual Carcinoma. Had 2 rounds ACH and then 6 rounds of CTH (carbo, taxo, herp) I had Radical Mastectomy with 27 nodes removed 9 of those were ca positive. I completed 34 rounds of rads. I have 18 weeks of Herceptin Infusions left ( yippie) and I started Tamoxafin about 30-40 days ago...... so here is the question. I am having major bone pain...in my right shoulder which is my cancer side...right elbow, right side of neck..... right and left ankles. I wake up and feel like I must be an 80 year old arthiritic person. I was declared cancer "free" about 30 days ago (praise God) but I know how this ugly disease can be so I take that to heart. I am the Mother of 3 children... my baby is 2 and my older kids are both 9. I have a awesome husband and great support. But I am freaking out with all this pain. I am not joking I have to wake up at 6am take a vicodin go back to bed for an hour and then get my kids up and going once I am out of pain. I talked to my oncologist a little about it and he says I am too young to be hurting like this...excercise more, walk...blah blah blah. I have read that the Herceptin and the Tamoxafin both can cause bone pain. My oncologist is great at treating cancer but thats it...he doesn't address the physco-social needs of a cancer patient or the after affects of treatment... he basically had me in there told me there was no sign of cancer but they did believe that it was there microscopically and to get back to "normal" what the hell does that mean???? I am a very strong person and usually have a high pain tolerence but this is really kicking my butt.... also being this kicked down is making me really depressed. I mean before I was pregnant with my two year old my husband and I played on a co-ed street hockey team, and now I feel like it takes everything I have to get up and do my motherly roles. ANyone with any advice or suggestions are greatly appreciated!!!!!!!!!!! Is this the Tamoxafin and I need to just get use to the drug... aaggghhh so frustrated. I should be feeling so much better right? so sorry this was way too long just feeling realloy lost.

TriciaV

[BonnieR]

I wanted to reply although I don't have specific answers for you. But wanted you to know I hear your anguish. Unlike your oncologist!
It is true that the drugs cause bone pain. I had quite a bit of it with Taxol. But I am alot older than you too. And did not have the family demands that you do
Is there someone else you can talk with where you get your treatment? A patient advocate or a social worker or psychologist who can offer support? A treatment nurse? someone to intervene. Your doctor needs to HEAR what you are saying and needing.

ETA: I misread the name of your drug. I thought it was an infusion drug you were referring to....

[dhealey]

I have been on herceptin almost a year will be finished in December. I haven't had bone pain from the herceptin, but have had alot with arimidex ( med like tamoxifen given when you have been through menopause.) I went off it for two weeks and strarted another one called aromasin. Was having the same problem until I started taking it at night. If you onc is not willing to listen to what you are saying perhaps you need a second opinion. Quality of life is just as important as quanity especially when you are a mother with active children. I have found through my experience that women oncologists tend to be more conpassionate. Will keep you in my prayers that you will seek the help you need. Best of luck.

[Patrice]

I'm so sorry you're going through this. I didn't take tamoxifen, but arimidex initially and would describe to family how I felt (within a month) exactly as you do "like an 80 year old". I was 52 at the time, but very active. The pain was so intense that I couldn't sleep and if I did, would wake up feeling, not just stiff, but like I was set in concrete. I changed to femara (both armidex and femara are aromatase inhibitors - AIs) and, while I sometimes feel aches and pains, it is so much less. I was perimenopausal and had an oopherectomy (age 53) so that I could take an AI instead of tamoxifen. You must be post-menopausal to take an AI - given your age this is probably not a consideration, but there must be some way to get you relief. There are pain specialists who deal with these kinds of issues (I only know this because my brother happens to be one).

I so hope that you get some help and would encourage you to speak to someone @ your onc's office to get it. It's not right that you have to feel such pain!

Patrice

[julierene]

I got terrible joint pain on AC. The combo just affected me so that I was so sore I felt like I was 80. After the treatment ended, I still had some pains, but they finally went away after a few months. I think treatment can weaken some of the things that we don't really know. I would try some glucosamine and see if it helps the joints any?

[Joanne S]

TriciaV, To me, your symptoms may possibly be post-mastectomy pain syndrome (PMPS).
See Harrie's post.
Click here>>> Post mastectomy pain (http://www.her2support.org/vbulletin/showthread.php?t=30779)

Also see my previous post, click here>>> Post Masectomy Pain (http://www.her2support.org/vbulletin/showthread.php?t=29738&highlight=post+masectomy+pain)