Wellness

[JackieHN]

F1 you just do your normal skin routine if you break out. The machine is a nice concept but I could have lived without it. Was just in the mood to buy something.

Lannie, hope your feeling better today. Sounds like you got it real good this time. Now as far as the exercise. I frust have to muster up the energy to get up get dressed and then start. I guess I just need to get motivated.

Celtic, I hope your coming closer to a decision about what your going to do. Once you make it the rest will be easier. For myself I just couldn't live with the thought that something could pop up in the future. It's always hanging over your head. That's not living.

Jxx

[wagirl]

Hello to everyone--holy cow--what alot to read so early in the a.m for me---had a kick a(s)s wind storm blow thru and it looks like a battle zone outside. We kept our power but thousands are still in the dark!! Thought for sure I'd be climbing out of a tree in my bedroom this morning---weather peeps say that we will be having more wind storms and less rain and snow down here but lots of snow in the mountains this winter.And of cousrse--theres the constant grey-----yuk!!!!

Lannie--so good to hear from you but you poor baby!! Your meeting sounds very interesting and very informative too. Glad to hear my constant complaint of pain is not all in my head. Been trying for almost a year to explain the difference but instead get all these tests that tell me I'm normal (?? ) Nothing is wrong on the scans and blood labs----and that is a good thing. P/t is doing a good job I think. Still going and have been since June I think. Am now getting the specific strengthening exercises to help build me up but need to do more for my heart and such. My p/t girl also did massage on my invisible boob (mastectomy side) and that was really good. My skin was adhered to my chest wall from the surgery so she loosened it up and now it feels so much better altho still is tender. I also use something called Celadrin. Its a topical lotion that has a bunch of good stuff in it for sore, aching muscles and joints. I use the brand Now and you can find it in the local healthfood places. Doesn't smell bad either. Seems to reallly ease the pain.

celtic--I agree with Jackie--get rid of that plumbing!! If it's going to be a constant source of worry--then out with it!! You research all the pros and cons and you'll make the right choice.

Jackie--I'm fine. Been taking one 50 mg of celebrex a day for the constant pain I THOUGHT I WASN'T having and what a difference its made. My pain wasn't overt and obvious and I did manage to live with it, I thought, until it wasn't there anymore from the pain reliever. Made my whole outlook change for the better. Was sheduled for an EMG in Nov to see if my nerves were the main source of my pain but not sure I want to go thru that. Seems like after all the p/t and celebrex I feel about 80% better.

ok--over and out for now!!

PAM

[lolakimono]

Friends, I was wondering if I may ask a question of the BC survivors:

A family member has lesions in her spine now, some 28 years after BC. If the tumors are estrogen based, she can have radiation in those spinal spots.

Have any of you dealt with an estrogen based cancer coming back and what was the prognosis?

TIA

[Cocoablue]

Hi Eveyone. It was nice to read everyone's posts. Celtic I know it must be hard making a decision. But I have to agree with the others, if you don't need that equipment and it's not going to do harm to remove it, then it would want it out! It would just make me feel better mentally knowing it was 'removed'. Lannie hope your bronchitis is much better. It can linger for awhile so take good care of your self! I am trying so hard with my skincare to stick to one routine and let it work. But it's hard when you always see things that look like a better 'mousetrap'! Our appt at Sloan is Nov 13. Dennis will fly up on the 8th and I will drive up with my niece on starting on the 8th. I talked to the dr and he was so nice!! Made me feel confident that we will be in good hands. He kept saying are you sure you want to come here, I can consult, I'll try to get you into Moffitt, etc... I said yes we want to come!!! I understand his concern, he said if things take a turn for the worse, you won't be home, and I said it will be ok. But in my head I said, they are not going to take a turn for the worst! I'm trying to help Dennis get stronger. He's so weak. I tell him a little at a time but it's hard. Now I tell him I can't carry you around the city so if you want to do this, you have to get stronger. It gives him a goal and I think that's good. I never ever let him see me cry but my heart is breaking. It's just always something. Those melanoma spots are all over his back and it makes me sick to see them. But I tell myself they're dying from the yervoy but what do I know! So a couple more weeks and we can continue treatment with in one of the best places in the world. F1 was your melanoma BRaf positive? We're you really week with the yervoy? Also, do you know of any research that says the worse the side effects, the more it's working? I hope everyone is having a very relaxing, enjoyable day. F1 I think you might be onto something with your STB ex. Human behavior is interesting!

[HerRoyaLioness]

Jackie - this lung thing gets worse for me every year. I don't have patient contact, but work in close quarters with3 other ladies, and one has had a bad cough for 2 weeks now. I also try and stay away from little kids and their germs, but was at an event and got stuck sitting right in front of a child with a horrible congestive cough. 3 days later and well, the rest is history. I had bronchitis a while back really bad and didn't get to the dr right away and it seems ever since that time I've been more susceptible to getting it. And as I get older it just hangs on. Add to it the post chemo & rads and I'm a gonner.......

By the way, when the PT was saying exercise is the main thing that will help with the fatigue, even during treatment, I thought to myself, ya right. I tried to go for a walk and got to the end of the driveway and had to come back. I couldn't get up a whole flight of stairs at work - my legs wouldn't take me. My onc always did and still does nag me about exercising. He wants me to join our sports center gym where we work and I actually am looking into it. Employees only pay $10/mo and we can get a personal trainer for a little extra. They have a pool there also.

What kind of face thing do you have - do I need one????? Gotta look good you know.

Pam - boy oh boy, isn't that the truth - nothing is wrong with us, our labs and tests are all NORMAL, right???? Then why do we feel so bad? The PT really made me feel like this wasn't all in my head. Our type of chemo hits our bodies hard - muscles, cardio/pulmonary - you name it. I'm still on meds for my fast heart rate I developed during chemo. She had it all listed on a power point presentation. I don't think it's something you can measure in the regular way. I give you so much credit for continuing to pursue feeling better - stick with, you're an encouragement to us all.

Hope I haven't scared or discouraged any of our new ones, but these are just some things that happen and we aren't always told about them.

[HerRoyaLioness]

On 10/25/2014 CelticAngel said: Jackie - thanks so much for asking how it went. I like the gyn oncologist, and his resident, very much. They were both very reassuring. He gave me some options, but basically recommends a full hysterectomy. He believes if it is cancer (which can only be diagnosed by removing my ovary) it is likely in the early stages. We did a few more tests (CT scan, OVA1 test) so we know more about what we're dealing with. Luckily the CT scan didn't show anything serious, other than fibroids denting my bladder. The results for the OVA1 test come back next week (has to be sent to the Mayo Clinic.) If all the other tests are OK I have the option to remove one ovary, both ovaries, a full hysterectomy or wait 3 months and do the CA125 & ultrasound again. Still no word on what is causing the pain on my left side. I hoped the CT would show something about what's happening on my left side, but it did not. That pain is still keeping me up at night. So the overall news is relatively encouraging under the circumstances. After all the test results come back, I will have some decisions to make. How is everyone else doing?

Hi Celtic - it's always so difficult to make these kinds of decisions. I changed my mind right before my surgery as to what I all wanted done. It's a change in our bodies that will bring us to a new chapter in our life. That's not always a bad thing, but we need to be ok with it in our mind and emotions. I remember when I went through menopause, I felt as though I had lost something. The control or ability over my womanhood, so to speak. Then I was ok with it. But I had to go through this little good bye thing to that part of my life. It's going to come upon us anyway. Sometimes we need to say good bye a little sooner than later for good reasons.

I know you have a little more information to get yet, but what I would encourage you to do is imagine you have made the decision and it's all set. How do you feel? A little anxious yet or totally at peace with it?

The one thing I really want you to think about, after having had cancer (breast) and went through everything I have, is that you do not want to have or get ovarian or any kind of cancer. Even if there is only the teeniest tiniest chance, you want to do everything within your power not to get it. Once it is there, there's no going back. You have it with all the possibilities of what it may do to your body. It shows no mercy. Ask Goldie, she knows only too well what it can mean and what it could have meant had it been caught way early or stopped before it really started.

I hope you don't mind my saying all this - the decision is yours and I'm sure it will work out very well for you no matter what you decide - you sound like you have very good medical care. Let us know what you find out and decide - we're with you all the way.

Lannie

[HerRoyaLioness]

Cocoa - I often felt that because I had so many severe side effects my chemo must be working really good! I know they give us the largest dose they can so the medication can do it's job and I hope and pray that is the case with your husband.

I am so glad you are able to go to Sloan, not that he isn't getting good care, but I'm sure this will be very reassuring and beneficial to see these specialists.

My heart goes out to you for what you are all dealing with and staying so strong. One of my favorite sayings is “You never know how strong you are, until being strong is your only choice" (by Bob Marley). You my dear, have risen to the occasion and your husband is so fortunate to have you by his side. It is all worth it, and you will never regret always being there for him in every way, but very difficult to go through. So let yourself have that good cry once in a while - it's needed. Then we dry our eyes and continue on to the next step, as you have been doing.

Thanks for keeping us up to date, I think of you often and keep you and Dennis in my prayers.

Lannie

[AkaGoldie]

Hello ladies, how's everyone doing today? Lannie so sorry to hear about your bronchitis. I seem to get it every fall and carry it all through the winter, but so far so good, I haven't come down with it yet. After chemo, seems like every ailment is ten times worse. But I hope you're feeling better soon. Homebody , good to see you post, I can't say I remember your story but I do remember you. Please hang around and post with us. Celtic. I'm going to put my two cents in too. If childbearing isn't an issue , please do yourself a favor and have everything removed. When they do the hysterectomy and it is cancer , and it hasn't spread beyond the ovary itself . Then the surgery should be short and have a fast recovery. Plus you will be a very Lucky girl, most ovarian Cancers are not found until it's spread to a late stage. Wish you the best of luck . Cocoa, how's Dennis feeling? And how are you doing? Please remember to take care of yourself. Everybody enjoy the rest of the weekend. Goldie

[Cocoablue]

Thank you Lannie and Goldie, your words of encouragement always help me. I don't know why I'm having such a bad day today! I guess because Dennis is feeling so lousy. But I am trying to remember that it happens after each treatment. I keep telling him he's going to be ok and get stronger each day. What have you all found works best for dry mouth? We're any of you on oxygen? Jackie, he is getting lots of mucous from the oxygen, anything that can be done about that, besides not having to use oxygen!. It's such a beautiful day here and I want to scream to all the people I see, don't you know the pain that so many people are in??? There's a panic over Ebola, well, I think there should be a panic a million times more over cancer!! But I guess it human nature, unless it's happening or has happened to you, there's no involvement. I had someone I considered a friend, not a BFF, but still a friend send me a text a couple of weeks ago and, and I hadn't heard from her in weeks, and she says, how's Dennis then .... Guess what Tara (her daughter) is pregnant! Yeah!!! - I never replied, is that unkind of me? I don't know and I don't really care right now. Tomorrow I have to track down all of Dennis' scan discs and the worst, his lever biopsy slides, that last I know were at Moffitt. I am dreading it! maybe I will be surprised and it won't be too bad Thanks for being here Diana

[Homebody1]

Hi everyone. I started to go back and try to read your previous posts but there are a lot to read so I will keep up from here. Thank you for your welcome and well wishes. One of the things I'm dealing with now is neuropathy in my feet from the chemo I am on. I was just going thru a bout of it about 25 mins ago where the side of my rt foot was hurting and stinging so bad I was ready to take a sledgehammer to it. Then I got my FB friends on board praying for me and its calmed down almost completely. One thing I want to say is prayer works and also trying to stay positive. Also we have to listen to our bodies. Last year on my 36th WA, my heart was beating strangley, palpatations. Then I got sick and something told me to go to the ER. I was there for awhile and the dr came in and said I'd had a heart attack...I'm like "Your sh*ttng me??" cause I hadn't had any chest pain, just the palpatations and got sick once. Next thing I know about 8 people came into my ER cubicle wearing black scrubs and started undressing me and hooking me up to portable monitors. I eventually asked some of them to step out of the room because they were scaring me. They took me down for a cath and when I came to from that I started having trouble breathing. Finally they put me out and I woke up 1 1/2 days later in ICU. I'd of been dead if I hadn't been at the hospital. My lungs started filling up with fluid and they were able to suction me out. If I'd been home, I'd of not made it. I also had heart failure and a mild infection in my heart muscle. Its like my testimony or something...listen to your body because you know it better than anyone else. I'm still dealing with a little of the congestive heart failure but my heart dr thinks I'm doing good and told me to not let it worry me to much but I still have to be careful. They think it was this one chemo I was on that caused all the problems.

I hope I dont sound preachy or anything, I don't mean to be. I just can't help myself. I get so worried when I hear someone talk about having similar symptoms, or if they are having a serious fluid retention problem like I was having. I'm ready to drive them to the hospital myself.

I will keep you all in my thoughts prayers.