anyone out there with auto-immune/chronic pain issues before dx?
Comments
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Hi Suz - hope you are feeling better. Chemo is no fun, but you can do it. I talked it over for a long time with my oncologist before I signed the release to do chemo. We worked through it together. One thing that helped was my top five list. The list of side effects was long, long, long. But it helped to tell the doc what the five worst things were. She could tell from the list if I was doing as well as the average bear, or if there were some serious things happening. By all means, tell them everything that's going on. But you'll learn what seems OK and what doesn't. Put the not OK stuff at the very top of your list.
AND DO NOT LET ANY NURSE OR DOCTOR MAKE YOU FEEL LIKE CHICKEN LITTLE. Take no lip, sister! If you are hurting, you call them. Period.
We've got your back.
Lots of love to you ladies.
XO,
Mary
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Surgery yesterday. I can't believe how terrible i feel. this is definitely the last ime i go through this for cosmetic reasons, i feel so so miserable and gross. i hope it gets better soon.
I better look freaking amazingly hot this time! -
Jessamie, I hope you feel better soon. 20 surgeries, I can't believe you have endured so many. I thought one was enough, but I'm sure I'll have more. Take care of yourself.
I've returned to my home for a week, I would of wrote sooner but it is uncomfortable for me to use the computer because of my neck. They found two bulging disc in my neck, now we have to fix it, soon I hope. Last week, I had a bone scan and cat scan, I think the unusual when they find positive lymph nodes. They said it looked good although the liver had 3 cyst, but not unusual, however they'll recheck in 3 months. They also did and extra neck scan, probably because of my neck injuries. I'm healing nicely with bdx, I have to go back on Thursday for a checkup. I'll be back for Christmas, looking forward to that. Then back next week for the oncology consultation (definitely a scary moment for me).
Thank you for your support, it has been a life saver. Mary your words are reassuring. I just saw a show on cancer and it talked about support systems, both group meetings and on line groups. It said that people with cancer had a better chance of survival when they were involved in groups with people that have had similar experiences. We are all helping each other out participating on BREASTCANCER.ORG.
Everyone have a wonderful Christmas, I plan on being with my wonderful family.
Lots of hugs,
suz
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jessamine- (((HUGS))) Your surgery snuck up on me! I need to start writing these things down. Hope you're not having issues with the anesthesia, again. Drink LOTS of water, girl! (Though I know you know this but I have to be the mother hen....) I hope this is your last surgery ever and that you get the results you're hoping for though I'm guessing you're already freaking amazingly hot (hard to tell from the tiger pic, though! LOL!) But, hell, we're ALL freaking amazingly hot, right?!? Take it easy, girl- do what makes you happy. (In my case it would be chocolate and mind-numbing reality t.v.!) Keep us posted!!
Just want to wish everyone a very Merry Christmas and Happy Holidays. Let's hope the new year is a better one for all of us!
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20 surgeries??? omg no...this is 4. but that's plenty. i think it's settled that i do not react well to anesthesia and after this- no more. i will look fine and that is just going to have to do! if i ever get this horrible bandage off (and after 2 weeks of a sports bra with socks stuffed in it, as per drs orders) I'm totally posting pix on the picture forum. Sorry about the neck and cysts Suz. bleh. May all our holidays be a well deserved break from pain and worry!
edited to add- yeah, i should put a real picture of me up. I never did when i first started coming here because I was in the middle of chemo and felt so hideous all bald and pale and skinny, and it seemed weird to put one from before. But this one is from before anyway. oh well! Now my hair is CURLY but I do finally look normal again. Right down to the boobs now, hopefully!
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Jesssamine - glad to hear surgery is over. Sorry you feel crummy. Sending love and hugs.Suz - I'll be thinking about you as your appointment approaches. Have a good holiday. (If you celebrate it - not sure.)Kate - Merry Christmas to you, too. 2011 is going to be beautiful for all of us. Just wait and see!Ho HO HO!!!!
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Hi Ladies and Happy New Year,
I just joined the Jan. chemo thread as I start chemo on the Jan.19. My onco and breast surgeon have given me two different protocols. I hope to go with the onco's protocol because he does not want to put in a port. I would like to skip that. My mastecomy is healing slowly, having some seroma, I can't wait to get a bra. I am still waiting for an appointment for my neck. The GP Dr was going to refer me to a specialist, but just called on Thursday to find out my appointment and he hadn't even refererd me yet, its been 2 weeks. I very discouraged, I guess I'll have to raise a stink to get anything done.
I hope all of you had a nice holiday and had some quaility time with your families. Mine was nice but I am still am very tired.
Take Care, hugs to all.
suz
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Suz- Happy New Year! There is probably no reason why you should get a port if you don't want to. It's easier for the hospitals/nurses, but it doesn't make a difference to your treatment protocol- just tell them you don't want it! Unless you had lymh nodes out on both sides, in which case you would need to I suppose, but that seems unlikely. The advantages are (as I'm sure you know and they keep telling you) that you don't have to get an IV each time, which is hard- since you had surgery already, if you had any lymph nodes removed, they won't be able to use an IV on that side, which will make things harder for you. I made it through chemo without a port, but without being able to switch arms it would have been very difficult- even with both, it was not good by the end, and we were down to having to use the wrist/hand sometimes while my other veins rested. If you have a hard time with your veins already, or difficulty dealing with them digging around for a vein (not that anyone doesn't have an issue with this, but I really gained an immunity after all this. I don't even flinch at blood draws anymore, and I was always squeamish pre-cancer!) you might want to think about whether you'll end up with a port 1/2 way through anyway, in which case so much better to go ahead and get it over with, both so you don't have to recover from the insertion surgery during chemo (infection risk) and to spare yourself going through all that and then having to do it anyway.
But that said, like I said I didn't get a port and I did just fine, through 6 months of chemo. So if that's what you want, fight for it! I really don't think they can make you.
I'm sorry you feel discouraged. Who can blame you? It is hard to always have to do all our advocating for ourselves! But it seems that is just how it is. Maybe some bra shopping (soon) will cheer you up!
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Hi Friends! Happy New Year!
Suz, Jessamine tells it like it is. Mull all of this over. You'll know what's best for you. Thinking about you this month, and hoping you are healing from surgery. Keep us posted - we're here for you!
I am determined to throw away all of the cookies a chocolate left from the holidays. I got into some baaaad habits, and it's time to get on track again. Bummer, huh? But TODAY is the day I start exercising again. Gotta try.
Hope you are each doing well, and that symptoms are at bay. Let's look forward to a kinder, gentler 2011.
XO,
Mary
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Mary- Happy New Year to you, too! I am trying to get the energy to exercise today as well but it's hard. Fibro symptoms have been through the roof the past few weeks. I finally gave up on the Lyrica (second time now) as I was having lots of SE's on it. I can't say I'll miss the large price tag that comes with it. Not sure if I should trudge back to my doctor to see if she has any other tricks up her sleeve or not. But you have motivated me so I am going to drag my sorry ass upstairs and get on the treadmill!
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I am finding that Arthrotec instead of Naproxin has helped break my pain cycle. Now any symptoms are easier defined as FM or OA. I can finally see the light! It was a long 6 months. But then, I was : staging the house for sale, packing the house, moving the house, unpacking, painting, cleaning, emptying boxes, etc at the new house since October. All while working! No wonder I took a dive. At least I'm out of it now.
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Hi Ladies,
Happy New Year! I have decided not to have a port and the onco is good with it. I'm happy because that eliminates a surgery and a procedure. I finally made an appointment for the neck specialist, the Gp was taking to long. They were happy (Gp office) I did there job. My appointment is for Jan.13, I wanted one before chemo, so the specialist could give me advice.
I hope all is well with everyone, thanks for the advice and support, it is so nice to have friends who understand.
Lots of hugs,
suz3
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I have psoriasis which is auto-immune. I have it in my nails and I have to have all my nails removed. I can't take the meds to help with the nails because I have had cancer. thI also have a form of artheritis that goes along with it. Life is a bowl of cherries LOL.
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Oh and since I have been on Tamoxifen I can't seem to spell.
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I have RA, fibromyalgia, and Sjogren's. When I was diagnosed with breast cancer and had mastectomies (31 March & 26 April 2010), I believed that chronic pain and autoimmune issues were the bigger issues and always would be for me - even greater than breast cancer. I was fortunate to be able to have the cancer removed and not have to have rads or chemo. The oncologist I saw told me she would not have been able to radiate me due to the RA. Breast cancer is behind me and reconstruction is coming up as I am scheduled for DIEP on 1 March. Others don't understand my hesitation...I'm in pain now...not looking forward to more. I am on Enbrel and Myochrisine (gold IM).
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Marxi, one of the reasons I haven't done a recon is due to my FM. You are very brave!!!
I couldn't do rads as the tumour was at 6 o'clock right over my heart. I couldn't chance that.
I had a double mast so I wouldn't have to go through recon or a future mast. Got it done in one!
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Barbe, this is one of the reasons I worry...many mornings it's difficult to get dressed and I am in pain most days. I still haven't gone through with it yet...is there anyone who has these health issues and has done DIEP? I would be very interested in knowing how they managed. When I had the mastectomies, they pumped large doses of prednisone through me prior to and for 48 hours after the surgeries. That, of course, helped with the RA. Yes, I do wonder if my abdomen and chest are sore and I need to rely on my knee joints how that will work.
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Marxi are you getting implants to augment the DIEP or all from your own body? I know of a couple of women who had to get implants removed due to the irritation of a foreign body. I just don't want to take a chance of not getting out of a flare. I am finally out of a 7 month flare where I was sure I was going to die or go crazy. I don't want to mess with that.
You know your abdomen and breast will be numb right? Knowing that going in, you won't panic when you don't get feeling back. I am 52 and have to work. I can't take the time off. If you can take care of yourself afterwards and truly take the time to heal it should be doable.....
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No, I can't have implants because of the RA. That was my plan...I need to have the DIEP. I know things will feel numb and I'm okay with that, it's the pain during recovery that I worry about...it sounds like some people can't manage it even with meds and that scares me. I have about 14 - 15 weeks I can take off work. If I sound like a chicken, it's because I really am when it comes to this.
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Hi Marxi - nice to know you. You don't sound like a chicken at all. I think it's smart to get the facts before you make a decision, and it sounds like you're doing a good job. You are going to get through this, and we're here for you.
Suz3 - How's it going? Any word on your neck? And if memory serves, Wednesday is a big day for you. Go, girl! Keep us posted, will you?
And to everyone else, hello and hugs. Hope you are getting strong and enjoying this wonderful life.
XO,
Mary
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magob, i really do appreciate the words of encouragement. i have been telling people today at work how great this message board is and it is good to connect. i haven't talked with anyone about my bc or anything and have just pretended it was no big deal. now that DIEP is coming up, so are all the emotions that i have been running from. i very much want/need support as i move toward this. thank you.
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MAGOB- My neck hasn't changed much. The last dr said I wouldn't need and operation (good news) but some pain management injections. I think I'll will wait to get any injections until my chemo over, I may have to get a lawyer to get new drs. You do have a great memory, I do star chemo, wed (l'll keeping my fingers crossed). Thanks for caring.
Marix, difficult decisions we all have to make, I hope you choice works out. I choose a dmx with delayed reconstruction because I have to much pain in my neck, I wuoldn't be able to carry the weight on my chest. You have a lot to deal with be careful, take your time and get a lot of advised. I know Barb1958 gave me a of advice, which was quite helpful. I am glad you joined our thread.
lots of hugs suz
so I can get new drs. You have
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suz3, I got epidurals in my next. Two of them. The pain management centre was stunned when I came back for the second one! They said I really must have been in pain to voluntarily get another shot. The shot numbs the area, adds steroids and botox and other stuff. It breaks the pain cycle so you can start to heal. Consider doing it now. It's 20 minutes of ouch, then pain free. You deserve it!
marxi sounds like you have a solid plan, go for it!
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barbe, how great to come on here and have another boost of encouragement! just read on another post about how painful the DIEP is, again...and, it just scared me, again...yes, i need to go for it and trust for the best.
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Barb1958-Thanks for the tip, maybe I will try it. I don't know if they will do during chemo, I start tomorrow. Right now I haven't got an appointment for the pain dr. They take along time around my area to get an appointment.
I hope every is fine.
suz
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Marxi, you can DO this. I know it must seem like you're swimming in a pool of doodie right now, but I promise there are always pearls at the bottom. Always. I'd be willing to bet there's a BIG one there for you as we speak. Hang in there.
Suz - you, too, sister. Let us know how chemo went today.
XO,
Mary
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Suz, shouldn't make a difference if you're doing chemo. You deserve to get it sooner rather than later. You go girl!
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Here's something interesting-
I just read a report by the University of California. They did research regarding pain levels post MX and post MX with reconstruction. They also compared it to women who have had augmentation and breast reduction. The findings showed that the women who have had MX with recon had the highest rates of post surgical pain even over a year later. And women who got implants had the absolute highest pain level of all. They stated, based on the findings, that all women should be counseled on the possibility of developing chronic pain after recon with implants. I don't know about the rest of you but I was never counseled about any of this and this study was reported back in 1996. Seems like if nothing else, they should make those of us with auto-immune diseases aware of the risks so we can make an informed decision regarding reconstruction.
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Hi Ladies,
Chemo went really, no strange SE yet, just a little sinus stuff, which they said might happen.
Barb- I asked about the pain shot and they said absolutely no shots until chemo is over, I kind of figured that. I am going to get another opinion from a none work man's comp dr, I think they (wmc dr) are biased toward the work. Plus I have extra bone scans from the cancer scans, they did a special one on my neck. Should give me more information.
Katie33, good information, it doesn't surprise me. My allergist told me facts and discouraged me fro recon. because he thought I would get chronic pain. He told me to get it in writing from the PS that it would be 100% pain free after the normal recuperation. Plus he said he knew a PS who has taken dozens of unsuccessful recons. I listened to him got a dmx with no recon.. However they want me to see a Physical Therapist because my scares are starting to stick to my ribs, hopefully that will work.
MAGOB- Thanks so much for your support.
Hugs- suz3
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suz- Glad the chemo went o.k. Hope it continues to go well for you. (((hugs)))
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