Class of 2009 - Sisters in the same time frame
Comments
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Juanelle - Awww I'm sorry that the snow didn't stick around. I know you are glad though. It's been a cold day here as well. I had a good Christmas... it was a lazy one. I did absolutely nothing but lay around and rest all day. I finally cooked late last night and we had b'fast for super (just me and DH). I hope you get a call at the first of the week to get rads started ASAP!! A lot think it's easy compared to chemo and you probably will as well, I even do compared to my experience that I had with chemo yrs. ago. I haven't thought it has been all that easy on me though, I have been one of the few, I guess, that has had some minor side effects like the sore ribs which I now think is Chostochondritis. It's been 2 weeks and it's no better so there must be something to it? I pray that no one else gets to experience it. It's doable like chemo but it's a miserable kind of soreness.
Praying that everything turns out great for you
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Hi...thank you for your positive comments and for asking about my son and the disease he battles. "Adult Onset Stills Disease" is an ugly auto-immune condition. He has arthritis internally and it affects his organs as well as his skin and joints. His heart, lungs, liver and spleen are engaged in the disease and at times he has a hard time swallowing. About 1 in 100,000 are stricken with this awful disease and there is no known cure. If you get it as a child you usually grow out of it by the time you are a young adult. If you get it as an adult...like my son...you have it for life. His wife has now left him (she didn't want to be his nurse) and he has very little energy. Even packing a few things to come to the island (we live on Vancouver Island) took him a few days as he didn't have the energy to pack it all at once. He has to get to bed by 7:30 at night if he is working the next day. He is still able to work...4 days on and 4 days off. My heart goes out to him as he is such a hard worker, and tries not to complain about his condition. The latest symptom he is fighting is Renauds Disease. His fingers and feet are so sensitive to the cold and go whie/blue after only 30 seconds of being outside...anyway...thanks for letting me vent. I know he is very worried about my recent diagnosis and I want to beat this thing and show him we can get on top of things and keep moving forward. Thanks again for your comments and good wishes. Take care of yourself as well! God Bless...
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Linda- Please know that I will be praying for you and your son both. There are medical advances everyday. I don't know much about Stills Disease, actually I know nothing more than what little you have told us here, but I know that God can heal and performs miracles everyday. May God Bless you both. I pray your journey with treatment in your diagnosis is an easy one. Take Care.
Renee
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Linda, my heart goes out to you and your son. I lived in Comox for a number of years so I hope the lovely weather there is some reliefe for him when he visits. Where does he live?
Feeling a bit better today. Just hate this dry mouth.
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Michele,
Thank you for your comments. Mike lives in Port Moody which is just outside of Vancouver. He would like to move back to the island one day as most of his family is here and he is eventually going to need a lot of support due to his illness. He was only diagnosed last year and apparently the first year is the worse...but for Mike...he continues to get new symptoms. This disease really acts up when any type of stress is happening (good or bad stress). Even watching a hockey game can create symptoms or a "flare". Again, thanks for caring.
You have a dry mouth? What is that from? I see your cancer is very similar to mine except I don't know the stage yet. Was only diagnosed on December 18th. Surgery soon (I hope)...but don't like the waiting part as I'm sure nobody does. Are you taking radiation right now? When you say 3/12 nodes...does that mean they removed 12 nodes and in 3 of them they found some cancer or that 3/12 is a type of ratio used to measure cancer growth? (Sorry...I'm still learning the new language). It sounds like you have a positive situation from everything I've been reading...a lumpectomy, radiation and possible chemo and then close monitoring...is this right? I am making it sound simple but generally speaking...am I right? I guess I'm quite conerned as I've arranged for me to work from home (I work for the government) while I am dealing with my cancer (my work is quite specialized and there isn't anyone in place who can cover for me...LOL) and now I'm wondering if this is a realistic plan. Maybe I'll be too sick?? I gues it will depend on what they find when they operate. I should say that I've not been feeling that well for the last year and have had minor issues with almost every part of my body...you can well imagine that right now I think I'm full of cancer everywhere and I'll get a call from the specialist (who will look at my MRI today) and she will tell me they are not even going to operate because it's far too advanced and they don't want to put me through the inconvenience of a surgery....LOL. My husband is so mad at me for even thinking this that I can't discuss it with him. Perhaps I'm just venting here Michele...and thank you for listening...but this is my worse fear.
You used to live in Comox? Are you with the military or is your partner? Where do you live right now? Hope to hear from you soon....take care....
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Hi All!
Hope all of you had a great Christmas!
Juanelle~ Congratulation on finishing chemo! I am very happy for you and hope you get to feeling better really soon so you can enjoy that new grandbaby of yours!
M360~ Glad you found a new facility to go to. I hope you find the level of care that you deserve, which is the best! Good luck to you!
Alicia, Michele, Pam and Renee hope you are all doing well and having a good day. Now that Christmas is over maybe we can all have some down time and get some rest.
Just a little update on my situation. I went to see my onc on Christmas Eve and he is pretty sure I have lymphedema in my breast. He wants me to go to see my BS to get his opinion. I asked him if he thought I would need surgery and he said no, just to have him look at it and get his opinion. So I made that appointment. He also is sending me back to the lymphedema clinic and gave me a pain med to take. A week from today I go for my 6 month mammo. I am pretty nervous. I know it will hurt, as my breast just hurts anyway. Them squishing it will be even worse, and I will be nervous until I get the results. But, whatever happens, happens
Take care! Hugs to you all!
Jen
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Jen - sorry to hear about the lymphadema. There are some really good tips out there to help keep it under control. You are in my prayers. Let us know how things go with the doc, will you? Hang in there.
XO, Mary
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Mary,
Love your new Avatar!
pam
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Michelle -- Yeah the dry mouth is an SE from chemo. I had it. It's a good idea to get some Biotene mouth wash. They sell it at Target. It's non alcohol based mouthwash which can help restore moisture. It's bad for the teeth for the mouth to be dry for a long time, so the mouthwash is helpful for that (among other things). I am still using it
Linda the 3/12 means 3 out of 12 nodes removed had cancer (or traces) in them. So in my case it's 1/17 so that means yes, alas, they took 17 out and only 1 had cancer. Ah well. It's my understanding that if you only have a total of 3 or 4 nodes out you are much safer when it comes to risk of lymphedema. So Pj, for example, who had 0/2 is in a good situation vis-a-vis risk of lymphedema (not to mention lucky that she had zero nodes!)
Cheers,
Lilah
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Linda, welcome to our little group.....Lilah is right about the nodes.
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Thanks, Pam. It took a little courage to see myself in a photo - just could not add the avatar until now. It's nice to make my debut with such a sweet group of ladies. Love to all of you. XO, Mary
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It's true, in the breast cancer lottery I have been very lucky. I did not join this forum until after surgery so was totally dependent on what my surgeon said and did. I was so fortunate that he even did SNBs... I did not know to ask. I have had very good care and love all my doctors. It is still a roll of the dice... we'll see what happens in months and years to come. I am afraid to be too optimistic... don't want to jinx myself.
pam
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Hi Mary (Welcome), Jen (sorry to hear about your lymphdema hope everything gets straightened out with that), Juanelle, Pam, Lilah, Michele, Alicia, M360 (hope you like your new clinic and that they do right by you). If I missed someone I'm sorry, it's hard to remember everyone's names. Sometimes I have radiation brain. That sounds crazy but it seems like I have gotten forgetful since I started radiation. I don't know if it's because I'm tired, overwhelmed or if it really makes me forget things. LOL!! I had #12 radiation treatment today and saw the fill in Onc from Atlanta, to my surprise I actually liked him more than my own Onc. He did tell me my breast was a little red today, but my skin still looks good. Although I did see him right after my rads txt.
Hope everyone had a great Monday!
Renee
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Michele...thank you...and thank you everyone who is giving me support. It is humbling to be so welcomed by virtual strangers. Compassion is a strong emotion and certainly I feel it from everyone. Again, thank you all so much. I will certainly try to set the same example in my postings.
Belonging to such a brave and well informed group makes me feel "safe" if you know what I mean. I realize I'm not alone and there are so many of us out there...and we can talk to each other...give support and gain insight into this strange situation we've all landed in. Oh my goodness.. LOL...what on earth is going on anyway?
I am going to call my specialist tomorrow to see if the MRI results are back and if she is willing to go over them on the phone with me. Wish me luck!!
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Renee, I did get the call today from the Rad Onc setting up the appointment. It is on 1/08. So I guess we will get it started in January. WoooHooo. We are expecting ice and snow tomorrow night, boy oh boy. We don't know how to deal with ice and snow here.
Linda, thanks for explaining your son's illness. I am so sorry to hear that he has such a terrible disease and that there is no cure. I will keep you all in my thoughts and prayers.
jen, sorry you have lymphedema in your breast. That is one thing I hope I never get, but as with everything with this monster, you never know what is going to happen to you. Good luck on getting it taken care of.
Mary, your avatar is beautiful.
Good evening to everyone, pam, michele, and lilah if I left you out I am sorry.
I am just now beginning to feel somewhat normal again. I have just lounged on the sofa for 2 days and finally wanted to go eat pizza tonight. It certainly did taste good. Yesterday nothing tasted good, water, tea, juice, soft drinks, nothing. I just couldn't get past the bad taste. But today has been much better.
I do have my consultation with the Rad Onc set up. It is for 1/08. On to the next step. I am ready. I just hope the rads do not fatigue me like chemo has. Only time will tell.
Hope everyone has a good evening.
Juannelle
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Juanelle - Wooo Hooo to getting started with your RADS that means you are in the home stretch to finishing your txts. And a double Wooo Hooo to more Snow (Boo to all that ice... Yuck!). LOL!!! I do so wish you would send some of that beautiful white fluffy snow our way. :=) I miss it here. We use to get a lot of it when I was younger, but not so much anymore.
Glad you enjoyed your pizza, I love it to. It's probably my favorite food.
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I can remember when I was a child how we always celebrated the snow. I was raised in West Texas, so it was colder there and we did get more snow than here. But now, I certainly don't look forward to it. I do think it is beautiful and can't imagine living where you would get several feet of snow. My sister lives in Oklahoma and she said they had 5 foot snow drifts. She hasn't been out of her house in 5 days. But tomorrow she is coming to Texas, so maybe she will bet snowed in here.
Pizza is one of my favorite foods also. Especially after chemo, when I want everything to have a strong flavor, where you can taste it. I have been eating lots of nachos with peppers, just to get the bite. Sometimes they don't always agree with my stomach, but oh well, an antacid will take care of that.
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Juanelle - LOL!!! My stomach is on fire thinking of the Nachos and peppers, but aren't they just so darn good?!! Have a great visit with your sister! :=)
Renee
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Aw Jenn -- somehow I missed your post about the lymphedema in your breast -- I am sorry! And sorry you have it. I didn't know one could get it in the BREAST -- geez. What are your symptoms? Are you in pain? Or is it like arm lymphedema (swelling)? Hope you get relief soon.
Cheers,
Lilah
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Good morning everyone, it is a chilly day here in the Chicago Area. But, the sun is out! That is a good thing
Lilah~ My breast is very sore and tender to the touch. Also, it is pretty swollen and a little pink, I am also getting sharp shooting pains from my nipple area and also from my scar area. I have many appointments next week. I have my mammo on Monday morning, then Monday evening I go to the Lymphedema Clinic, then Thursday morning I go see my surgeon again. I have a feeling they won't be able to do much for me. My onc hasn't given me much hope that this is very treatable. The lymphedema in the arm is easier to treat because you can get sleeves and massage your arm a lot easier than the breast. He said he would do an MRI, but he wouldn't know what to look for in the results. How comforting is that! Oh well, just one more thing that comes with the territory.
Juannelle- I am happy that you are feeling better and that you are on your way to starting Rads in January. How many weeks/treatments do you have to do, or have they told you yet?
Renee~ I am happy for you that you are getting thru rads and feeling good. I found actually that I was a little more forgetful too when I was getting treatment. I don't know if it is phsychological or if the rads can really do that to you. Getting caught up in the daily routine of going to treatment and then dealing with the SE's can be hard on you for sure and do crazy things. But, just know you are not alone on that one
How is the redness? Are you still comfortable or is the skin irritated yet?Michele, Pam, Alicia and anyone else I forgot to name- I hope you are all having a good day and feeling well. I can't say it enough that I am so thankful for all of you! Love to you all!
Hugs
Jen
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Jen, when I went for the consult in August, I was told that I would do 6 weeks. But that doctor is gone and I am seeing another one now, so I don't know what his plan will be. I do hope you get some relief from the lymphedema.
Juannelle
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I survived my first Taxol yesterday NO allergic reaction woo HOO.
Tired but feeling ok so far, still on the roid HIGH . Just took down the Christmas tree and all the decorations.
Hubby and the kids are going skiing in Vermont for 2 days, hope I am ok on my own here.
Thinking of you.
Hugs ~
Alicia
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Jen, I sent you a private message.
Be well!
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Alicia - what is the thing with the Taxol and the roid's everyone keeps talking about (I think Michele may have mentioned it as well?). Since I didn't do the chemo I'm confused... does it cause diarrhea or something? LOL!! TMI ... I know.
Jen - I hope that they can actually do more than you think for the breast lymphdema. It sounds so painful. :=( Praying for your quick recovery from all of this.
Actually praying for everyone's quick recovery from all of this!!!
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Renee, I think most are referring to the steroids we take with our chemo. On the day of chemo and for two days after. Or at least that is what I get. They keep me awake at night and give me lots of energy during the day..Thank God not the other roids...I don't think I could handle having both openings sore...dry mouth is enough.
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Yes Renee ~ Like Michelle said they really pump you full of steroids the day before and the day of chemo to try to prevent any allergic reaction from the taxol/taxotere I believe. So yes you get a steroid high that keeps you up at night and gives you energy. I ripped down all the Christmas decorations and the tree today all by myself! Wonderful that there is no sign of Christmas now anywhere and my house is back in order. (YES, I have OCD). Michele suck on popsicles it helps some with the dry mouth.
Hugs ~
Alicia
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Alicia, I am now using the mouthwash you suggested and I think it is helping...now it could be just that the dry mouth is going away..
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It is so great to have all you smart and (sadly) experienced women passing along your BC wisdom! Thanks to everyone!!!
pam
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Michele ~ I think it really helps, and if nothing else it helps keep some of the bacteria at bay so we don't lose our teeth. CHEMO can do a number on us in the dental department. Glad your dry mouth is better !!! Hang in there sisters ~
Hugs !
alicia
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Alicia and Michele - Thanks for the info I feel like an idiot LOL! Of course ... I took the wonderful steroids when I had chemo before, but I remember having to take massive doses every day. I took Prednisone and I hated it and it had this horrible bitter taste. My mom use to have to hide it in blackberry jam to get me to take it. Oh I knew it was in there but that was the only way I could swallow it. I was 17 and what can I say it made me sick to take it. Of course I have taken it for sinus infections etc since then with no probs. Still don't like it but I will take it. Very happy it's not the other "roids". That would just be bad.
I completed rads #13 today and I am starting to get a little red. I have 25 more to day with the last 5 being boosts. I am little concerned what my skin is going to do. I'm not suppose to be being irradiated up to my collar bone but I am getting red up to that area and into my sternum and the top side of my breast and nipple that is where I am having stinging and redness at. It's like the beginning of a slight sunburn. I have some emu oil that I am going to start using at night after my treatments to try and heal the skin. Hope it works. :=) I'll let those of you know that haven't had rads yet.
Renee
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