MIDDLE-AGED WOMEN 40-60ish
Comments
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Sherry, my MO said twice a year so that falls in with what yours said. I have been googling it and compairing it to what my nurse said to do. Lot of water, good thing I am having it later in the day as I can drink water through out the day.
Thanks cuz.
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Walker, I used to get Zometa monthly (just switched to Xgeva). Lots of water and if you can (check with your doc) take a clartin the day before the day of and two days after. One of the biggest SEs is bone pain (usually only with the first couple infusions) and on top of hydration, hydration, hydration the claritin helps allay that SE.
The regular Claritin (not Claritin-D). And Store brand loratidine will work too (that's the generic claritin).
Don't be surprised to get flu-like achiness with it (but hopefully the water and Claritin will keep tht from occurring).
Oh, and if you need dental work do it before the Zometa starts. If you need it while you're getting it make sure your dentist and your onc know so they can take precautions against Osteonecrosis of the jaw (rare but possible SE with invasive dental work while on bisphosphonate).0 -
Reesie thanks for the info about taking Claritin with the Zometa. I was already on an oral biophosanate so had to get checkout with my dentist before starting it but am due to see my dentist next week which is the week before my first infusion. Unless something shows up I should be good with the dentist.
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Reesie thanks for the heads up on the dentist, my MO did explain that as one of the SE but usally for those who need to take it monthly instead of twice a year. Something to know nontheless. I have my dental check up in the summer.
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Joni, that was a GREAT mystery pic!!!! Don't give up....
Sherry, call me stupid (or forgetful might be nicer) but WHY are you starting new treatments when you were diagnosed in 2010? What have I missed?
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Hi all! I have tried to get into the swing of things as of late. So I deceided to do a few changes. I am trying to get back into excerising. Heres the deal though. I'm not a arobics kinda gal, so thats out! I do however enjoy pilates alot. I have have reconstruction, implants put in. Does anyone know if thats an issue because I have read that there were certian workouts to avoid once you have had a BMX. Any truth to that? Im done with the couch tater thing and want to get moving again. Plus I think it'll help with the Tammo aches. Plus the fact Im doing a double wave with one arm and I have never been that way before. Since I took a new job no more heavey lifting so I dont have that kinda workout anymore so my arms have gotten flabby, lol! Thanks for the input gals!
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A healed BMX has no restrictions, but if you had recon there might be. I envy you your focus. I get achy just going up stairs to bed!
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Paula I do yoga and my PS does not seem to think that will be a problem for me to continue once I get the green light. I love yoga, very relaxing but a workout at the same time.
Barb-no you did not miss anything. There has been an ongoing study about biophosonates reducing the recurrence rate in early stage, pre menopausal, no chemo women. I fall into that category. Because of this study my MO has had me on an oral biophosonate (Fosomax) for the last six months. He felt that because I was in a grey area for chemo and choose not to do it that it would be good for me to have one more thing for protection. I am also on Tamoxifen. At the San Antonio Breast Cancer Symposium in December they came out with the final results of the study and it is specific to Zometa. MO and I talked about it and decided to move forward with this treatment if my insurance would approve it which they did so I will be starting Feb 8th. I will also be having a BMX with reconstruction on March 26th. I am doing this because my first BS did not give me all the information that she should have at first. I found out when I had almost finished rads that if I had done this in the beginning I would not have had to have rads. I was pissed. Anyway since my last surgical biopsy ( B9) they took about 1/3 of my breast (and that was my good one) and I am very small. I was already contemplating doing a BMX so I don't have to be screened every 6 months and MRI's yearly as they tell me I am at high risk for local recurrence (because of my history of ADH and both breast are very dense and full of calcification's that are on constant watch). Geez would have been nice to have known that in the beginning. Anyway this last one did me in and I am moving forward with having them removed and reconstructed. No more scans for me unless I end up in that 2% and get recurrence. I'm believing that will not be me. Just had my last breast MRI and they will be removed before my next scheduled mammo. So Zometa for reducing my distant recurrence rate and MX to reduce my local recurrence rate. It is funny how the further out I get I am much more clear about what is right for me. I am not as freaked out and I ask alot more questions. In the beginning I just let the Dr's heard me around because I was in shock and did not know what to ask. Started out with Dr's that were not for me and have since found the right team. My MO loves the fact that I read up on things and I have questions for him when I see him. He is an MD and a PHD so he loves research and knowing what is new out there and always has an opinion.
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Big hugs to you all too
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Can I hijack this for a few just because I am so upset? We had to move here 1.5 years ago due to my DH's emphysema and COPD. We had a little land in Cheyenne and had two llamas. Yard pets really, but we loved them. Dolly Llama and Fernando were the names I chose...they were a birthday gift for my 50th from my hubby.
Of course we could not bring them here and we worked hard to find them a wonderful home. Free....but only to really a great place. Found the perfect couple with 10 acres and they built a brand new barn on the land per our orders before we would let them go. A big beautiful barn..that was all we needed after talking to the couple many times.
Kristi and I have mailed since we moved with updates and pictures. I have missed them terribly. I came home from the BS, and there was a new e-mail from Kristi. She said that Dolly passed away yesterday. The day before she was fine, no problems, eating and drinking well. Chuck got her from some people who just had a lot of llamas and wanted to thin the herd, so we were never sure of her age. I had her 7 years and she may have simply passed from old ages. They took wonderful care of them. She said Fernando, seems very upset today and so they are giving him extra treats and attention.
Cancer never made me shed one damn tear, but the news of Dolly's passing made me lose it. I will always remember her sweet shy ways and that beautiful face.
Oh....BS said I do have breast LE. This is not a great day. Off next to the MO.
Thanks for letting me cry on your collective shoulders.
Sleep softly my sweet girl!
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janis, I don't know llamas from schlammas. They seem similar to having mules as pets only with greater emphasis on hair care, but your llamas sounded like a cute couple. Sad that Fernando will be by himself now. R.I.P. Dolly. {Oh yeah, now see your pic, they have much more glamorous eyelashes than mules do.]
Do NOT panic about the LE, but get PT for it and learn the massage to keep the fluid at a minimum in that area. After months, after a year even, some new lymph channels may form and create new drainage pathways, so if you are lucky this could still be a temporary problem that will get better over time. It probably seems like you are all healed now, but nerves and lymph vessels are still trying to sort themselves out. LE is truly one of those things where "an ounce of prevention is worth a pound of cure" so do as much as you can for it now. Good Luck!
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Oh dear Janis! My heart goes out to you, sweetie. I know you wish you could have given her one last hug and told her you loved her, yet again.... She will meet you at the Rainbow Bridge when you pass, so you will see her again. I am so, so sorry for your grief!! But, I am SURE she knew she was loved by you!
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Sherry, what kind of recon are you going for? I'm glad I had a BMX as my right breast (which I'd already had a lumpectomy AND a cyst drainage on) had ADHP and was lining up to become cancer. In fact, there was a bit (a LOT to me!) of confusion on the day of my ultrasound, so when they finally said they were going to biopsy my LEFT breast I asked them to go tell my DH in the waiting room as we were worried they were going to do my right! (Just asked him and he said they never told him it was my left! Doi!)
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Janis what a cute girl you had there. I know you will miss her.
Barb I am going to have TE's with implant exchange later. The PS group I am going to does alot of DIEP but I am way to thin and don't have enough belly fat for that. Because I did radiation and I have lot's of nipple damage the other flaps become complicated. So we are going for the TE's and if that does not work we will probably have to do Latisma dorsi flap. However my PS says he has done others like me and has not had a failer yet. So let's hope i am not his first!
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Sherryc, Glad your recon. is finally on the calendar. I know you were on the "grow your own" plan, so how much weight did you have to gain for the surgery? What cup size will your recon. be? (Trying not to be too nosy, but I am nosily curious about how much belly-fat makes a boob?) I thought it was funny when you got a bunch of offers for "donors."0
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And Eph, yes, take ANOTHER turn. You are good at the Mystery Pic. We are not that clever and your last two didn't give us that much to go on, and lack of color made it harder too. You better let up on us a little this time.0
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Eli I ended up going to two more PS and they both said no to the DEIP. Said I would have to gain way too much weight to be able to harvest enough belly fat. And to my surprise one of the PS was the first one's partner. He is the one I ended up going with as he was very self confident that he could save my nipple on the radiated side and everyone else said no way. His thought on it was we won't know unless we try. If we loose it we will deal with it. No one else was even willing to try. But as far as size I am a 32A and don't even fill it up. I told him if I was going to go through with all this I wanted to be larger. So we are going for a full B cup, maybe small C cup. I am small framed and don't want to look like Dolly Parton. I figure in 10-15 years when I need to have the implants switched out I will be older and maybe fatter for DIEP or they may have the fat grafting science down to rebuilding boobs completely with fat grafting. There is alot going on in that research field right now.
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I've been off all but one thread for a while. Just too busy. This was one of the threads I read all the time and I miss you gals. Hopefully things will calm down some and I'll have time to check in more frequently. I must be 20 pages behind.
Did you know that once you have a MX, you can't feel anything on that side of your chest? Or in my case, with a double MX, either side of my chest. Of course I know that, but did it dawn on me when I picked up a hot bowl and rested it against my chest - NO! I found a burn with a blister, a little smaller than a dime, on the left side of my chest in the shower this morning. I never felt a thing. I put bacitracin and a band aid on it. I have a previously scheduled MD apt tomorrow, so I'll have her take a look at it. I once almost did something equally as stupid, when I put an ice pack on my chest in a desparate attempt to calm some very aggravating nerve pain. As soon as I did, I realized I couldn't feel anything and took the ice off, so no harm was done. Injuring myself because I can't feel most of my chest is not something I ever think of. Hopefully I'll be more aware from now on. Just thought I'd share so no one else does something this stupid to herself.
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Always learning on here. I have been extremely vigilant watching that I don't yank the tape off on my left side eve though I cannot feel it ...I can see that it would PULL something awful. But I have a feeling I might forget unless I remind myself from time to time. Having sensation on the right keeps me alert.
I don't think you are stupid at all. Just human! I like imperfect people who are willing to share their stuff.0 -
Hauntie its been 10+ years for my sissy and she still forgets she has no feeling sometimes. I find it abit weird sometimes myself. I have no feeling towards the outside of my foobs, but if you go more to the center of my chest I have complete feeling. Trust me my hands are cold, lol!
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Janis, I am sorry about your llama. She was awfully cute. I hope Fernando will be okay. I'm sorry about the lymphadema too. I remember you had a tough time with your skin after rads. I wonder if that makes lymphadema more likely. I have lymphadema too,but it's in my hand and arm,not my breast. Not sure which is worse. It's under good control now, but if I leave the sleeve off for awhile, it starts swelling. I hope Eli is right and we can grow new lymph channels. My onc says at some point I won't need the sleeve any more, but my PT isn't so sure. It is what it is I guess.
Eli, I had DIEP in August after chemo. I lost weight with chemo, weighed 118 just before surgery. I'm only 5'2 though, so I wasn't all that thin. PS said I only had enough fat for one boob. I've lost some more weight since surgery and that and rads caused it to shrink some. It's a small B and matches my natural boob pretty well. My biggest fear is since it is made of belly fat, if I gain weight, it will get bigger faster than the other one. I don't know if that actually happens or not. I am afraid to ask the PS though.0 -
Hauntie (and others) I had a double mast in December of 2008 and I have full feelling across my chest. It CAN happen!! I had to sit here and run a cold glass of water across just to make sure. It gets a bit iffy on my left side where I had a huge seroma but other than that I'm good. So that's 3 years out. I have no idea when I began to "feel" again, but do know that at the beginning some fabrics bugged me, so I must have had feeling then, too. Again, examples of us all being different...
Sherry, sweetie, please be careful what you wish for! A C cup is a LOT of weight!!! You would look very top-heavy as it looks like you have a small frame. Have you worn a bra with a C insert so you can see? I was a large C-small D and I had a SHELF of breasts (even after reductions)! If I got recon, I'd go to a B, and I'm big boned. My shoulders are very wide and I know I'd have an arguement with a PS, but having larger breasts bring it's own issues. Remember, a C on me is the same as a C on you!!!
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Kay I am very confused now about my condition. Last week my onc's nurse, Esther, put me on Keflex for what she thought was cellulitis. A week later the red on my breast and the warmth are still present as well as of course swelling and soreness. She phoned my RO as he wasn't in, described it, and he decided I have some vascular problem so now they prescribed a mild blood thinner. Esther said I need to take this drug (Trental) three times daily along with 400 IU's of Vitamin E once a day. She said right now the breast is too swollen and sore to start LE therapy.
So again I am delayed and not sure what will happen next. I do not go back to the RO now until Feb. 17th. If the redness and soreness is improved, Esther says then my RO will be there and they will work on starting the LE therapy.
She did say to wear only sports bras for now.
I am so sick of side effects, then delays, more side effects. Has anyone ever heard of this kind of treatment or condition before? She gave it a name and I forgot it...so tired from little sleep and then of course it was a hard day. Thanks for all the sweet comfort about Dolly Llama!
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Janis, did she call it Vasculitis or something similar?
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Barbe that sounds real close. Sounds like it. I was not thinking real clearly and should have written it down. I had a blinding headache and really just wanted to escape. Thinking you are right though.
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Thanks Barb, I think I will probably go a full B. My PS thinks that would be a good size for me. But like he said with the TE's once I get to the size I want we can stop. Also we don't know how my skin will stretch because of rads. He said staying smaller will give better results.
Janis-- Trental and Vitamin E is used for Radiation Induced Fibrosis. You can google it. It is also used to prevent. Here is something I googled on it: Another study, by the University of Rochester and National Cancer Institute showed that 85 percent of the patients experienced some improvement after taking the drug pentoxifylline (Trental). It appears that the drug works by softening red blood cells, improving blood flow to the scarred area and reducing inflammation of the area of radiation-induced fibrosis
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Everyone that is commenting about Mx...Due to the different locations of our tumors, and differing surgeon skill, I bet some of us just take more nerve damage and more lymphatic severing than others. Then, factor in that everyone heals differently (amount of scar tissue and all that.) Guess that is why the results vary as far as feeling returning for Mx, and the lesser surgeries too.
It was my RO that said during the healing of the first year, some new lymph channels form. Just like you grow some new blood vessels, I guess you grow some lymph vessels too; but again, some of us fare better than others. I just do not think enough emphasis is put on the lymphedema risk when going over the mastectomy option. Even with mild lymphedema, you will have a new sleeve-wearing lifestyle to prevent it from getting worse.
Since I don't see any of you online sisters, the worst case of lympedema I saw was at the one support group meeting I attended IRL. A poor woman had a right arm that was three sizes bigger than her left. It looked painful!
Sherryc, Agree with Barbe that you should do a test run with inserts of different sizes, preferably ones with realistic weight, to get an idea what will look and feel best.
Hey, Hauntie, don't even apologize for being busy with life. Hopefully it's the stuff just like in your "old normal" days, and not cancer-y things that you are busy with.
Kay1963, LOL! Watch out for the belly fat in its now location!
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My PT told me LE makes you more likely to get infections like cellulitis. I forget the reasoning he used, I think he said something about the fluid that just sits there can develop an infection, but I might have gotten that wrong. I couldn't start the pt right away either when I first got diagnosed. I was just starting rads and they knew rads was going to make it difficult to control. The key is getting a good pt. he or she will help you get the swelling down as low as possible and teach you how to keep it that way. They'll also help you get the right supples or whatever you need to manage it. It will get better when you know what you're doing. The beginning is the worst part.
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Sherry I went to a full B and couldnt be happier. I didnt want to go so big that they looked to fake. You just have to be comfortable in what sixe you choose. Good Luck
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Paula I am like you I don't want to look fake and defiantly no Dolly Parton!! I am so small chested all my friends agree just a little bigger would look nice and natural.
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