Stage 2 Sisters Club
Comments
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specialk we have a similar diagnosis except for the herception. You sound like an Aussie! Good to hear you are doing so well.
Welcome Amy you will get plenty of support and info on this site there are so many warm strong and positive woman. I have been picked up when I was scared or worried and in turn offered my own support.
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Amy so ssorry to hear you've joined our club. As Ruth said, though, you are in the middle of the worst part - still in the shocked part. This is really a great site for support. There are a lot of very kind and very knowledgeable women here.
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I saw this on the news, another gene PALB2 linked to breast cancer. http://www.cbsnews.com/news/new-breast-cancer-gen...
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Thanks everyone for the warm welcome. I can't wait to get to know you all!
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delvzy - Because of an Aussie dad and Brit mom I always felt like an American with a bit of a twist! I would love to visit Australia - I have a friend who plays soccer in the Master's Games with a ladies team - the next games are in NZ next year, so maybe we will make a side trip!
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Hoping I can join this group too. I have my second chemo tomorrow which got changed from TAC to AC + Taxol (weekly). First round of TAC didn't go over well and my WBC dropped to .7. The neuleusta shot seems to kick in the second week for me (onco said it works that way for some). Then my WBC went to 13. I had a lot of stomach issues with TAC so hoping just doing AC will be better. Happy to have found this group. I need the support.
Thanks
Nancy
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Welcome Nancy.
Glad you found this wonderful group of women. They are so great! Hang in there. You will get through this!
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Special - if you come to Australia next year you have to make sure you make a side trip to Canberra and visit with me! I can show you our country's capital!!
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Specialk I can show you Bendigo 1 1/2 hours north of melb (the most liveable city in the world) seriously you will love aus . I went to NYC and Philly a couple of years ago and loved it but it is fun to have locals to show you around. Nancy welcome to the site you will meet many new friends that 'get ' what you are going thru
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Trisha & Delvzy - how awesome would that be? I would love to see you both and have a tour! I am seeing my friend in California in a few weeks and will discuss this with her.
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I haven't been on this thread in a while, but I did read up some pages back about ALND. I wonder how many of you had numbness that went away? I had my mx on 5/6 and my armpit is numb along with the back of my arm and some of my back. Reading some of the links are a little scary thinking this could be a permanent thing!
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HM, did you also have your axillary lymph removed? Oh, yes, I see you did. So did I. I am four years out from surgery. My armpit is numb. there was a portion of my back that was numb, but for the most part, that feeling has returned. And, of course, my reconstructed breast is numb.
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Homemom - I had ALND and it took the better part of a year for the numbness to dissipate, it was very gradual for me, but it all feels fine now.
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HomeMom - I had a BMX and ALND in January. Some of the sensation has come back in the upper arm and the back of the arm. At first I couldn't stand to slip on bras or camisoles or even clothing because of the numbness and swelling. It was a constant reminder of what I had been through. Now I don't even think of it anymore which I think is real progress. Yes, there is still numbness, like in my armpit which I know will be permanent, but some of the feeling in the back of my upper arm has come back. It takes time. I also had cording, a frozen shoulder, and swelling in my arm. I think having PT with an experienced therapist really helped me, but before I found her I had some bad PT's. My OT showed my DH how to massage the huge "mound" I had under the arm (where the bra band usually lays) to release the fascia muscles. It really helped! I'm currently recovering from exchange surgery and am anxious to get out of this compression bra so I can start massaging again and find a new normal. Good luck to you!
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Thank you for the responses. My BS said she could give me the name of a PT if I need it. I think I will call and see if that will help. My PS nurse told me it could take a year to go away. I gotta do whatever I can to help it along.
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homemom - you might want to be sure that your PT is lymphedema certified, even if you don't have LE, just so they don't do more harm than good. Check for a PT connected to NCI certified facilities in your area - is MDA now UF? I would check there.
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I did ask her about that because I read that on here that they need to be LE certified. MDA is UF now, but I am going through Florida Hospital. I'll bet the PT will be through there as well
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homemom - I have FH here in Tampa (several of my surgeries were there, and I worked there in Transfusion Services) and I know that my local one has LE certified PT - maybe yours will too!
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They are going to call me back tomorrow with a recommendation. No reason not to be proactive. Now if I could get rid of this damn cough I'll almost be normal.
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Special - yes that would be awesome! Keep us in mind!
Delvzy - might have to compete with the most liveable city though - Canberra is pretty special lol. I've been to Bendigo (my grandmother lived in Kingower, just out of Inglewood!) and we'd go through Bendigo to get there, it is a lovely spot
. Trish
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hey Trish I suppose I am a little biased lol
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After a little over 3 months, I think the numbness bugs me as much as anything. Did not have ALND, but some LN removed during BMX. I don't like touching the numb areas across my chest, underarm and top/back of arms. I know this is bad, because my surgeon said to massage from my neck down across my chest. The tiny bit of sensation I have in my upper arms makes it feel like everything is swollen when my arms are down or like my underarms are packed with gauze or something.
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After a year & almost 4 months I am still numb down my right tricept & arm pit & a small section of my back. It still freaks me out when someone stands close to me. Not that it hurts to touch its just a weird feeling & I dont want anyone touching it. Part of the package I guess - but you do get used to it. It has gotten alot better since the bmx but no where near a 100%. My foobs are funky too, but I dont pay much attention to it all anymore.
My friend started her treatments Tues - so far so good! Thanks for keeping her in your thoughts - I know she appreciates it & so do I.
Nisa - how did everything go?
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hi everyone, i may know some of you already, but am officially joining! I am stage 2 idc, just had my first chemo 8 days ago. SEs are very disruptive, but i am doing pretty well overall. Got my first canker, despite manic mouth care! Switched to sensitive toothpaste today. Does anyone recommend drinking loads of gatorade during and after my next round of chemo? And ice sucking day of? I felt horrid day 3, after neublasta shot. Suggestions are very appreciated! It is a rainy day in Sarasota today.
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Bippy - it is raining here in Orlando too! I didn't get the mouth sores but I did hear that sucking on ice cubes during infusion helped some people. Definitely hydrate a LOT during and after treatment. Lots of water, gatorade, popsicles too! Also, while there is no SCIENTIFIC evidence this helps, take Claritan the morning of your nuelasta shot and for about 2-3 days afterwards. It helps with the bone pain.
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I rinse with saltwater 2-3 times a day, especially before they develop. I am at the funky mouth stage about a week after chemo. My wonderful nurses say to drink Gatorade. I drink some, but suck at taking care of my self.
MJS, I still say a prayer for your friend. 'foobs?'. Yeah, def weird. I try to ignore them too.
My cold is at its tail end, finally. I have one more A/C treatment, then start T/H. I wore a wig yesterday. Hated it. I have a love/hate relationship with my port. Love that it makes chemo easier. Hate seeing the bump under my skin, feeling the hard item when I try to sleep. I am afraid to stretch out my chest (which feels tight), because the idea of something going into my vein down close to might heart is a little freaky. Thinking of getting a pink ribbon tattoo. Feel all hardcore with my bald self. Someone posted this on my FB. Want to share with you great ladies.'
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Thank you missing!! Hope you find what works for you - glad your cold is getting better too. Love the picture!!
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Drink a lot of fluids before your infusion (as well as during & after). If you try Claritin for the Neulasta (which many people find helpful), make sure it is plain Claritin, not Claritin D. I used Biotene toothpaste & mouthwash as recommended by my dentist, and they seemed to help. Dove soap is the most gentle on the skin. As for the port......I really, really hated that damn thing, but was very glad to have it as to not blow out my veins and cause permanent problems later.
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ruthbru, i sure will do gatorade this time. That neulasta shot was the worst with bone pain. I do use the biotene and am ADD with oral care! Only 1 mouth sore, i am grateful not worse. My port..... Oh, i love it and hate it. Happy it will makes chemo "easier", but Still healing and itches like mad! Always aware of it, and it skeeves me out, i cannot take touching it!
Homemom, i did do,claritin and i am sure it prevented alot of the pain!
Missingmerc, i love your bitchin bald attitude. Hope i can emulate it when my hair goes! I do the salt water too, jeez, my mouth has never been so clean! Cancer, the great oral care motivator....
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My wbc count has been high every time, enough that the nurse has gone back to my MO and asked if I needed to do the Nuelasta shot. Each time she said yes, but time before last I had bone pain even with taking the Claritin. They told me it was the Taxol. Then last time my MO said to reduce the amount of the shot by .2, and whalla, no bone pain! I've been blessed that my se's have been limited to fatigue, some constipation and loss of taste. Knock on wood!
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