Starting Chemo in Nov. 2011...anyone else?
Comments
-
I am with you folks. I was thinking it wasn't cancer that got her, but complications of the cancer. Not that it makes a difference really, because one way or another this disease sucks!
I feel bad posting this with thoughts about Julie, but I had my CT Scan today. The first since I began treatment again for the nasty cells that got to my adrenal gland. " Marked reduction" was the words used by the radiologist. My onc showed us the scan from DX and the one today. The tumor that was growing is gone. I am not sure who was happier, my onc or me. He had the biggest grin on his face when he came into the room. Onc said the radiologist said "marked reduction" cuz he knew something was there previously, but if you never knew anything was there, my adrenal gland looks normal.
I can breathe this weekend. And begin packing up my house!
Be well
Nel0 -
YAY Nel!!! You can breathe easy! Have a great weekend!0 -
Nel ~ To say I am thrilled for you is an understatement. So happy to hear your wonderful news! Do what makes you happy this weekend...you deserve it!
0 -
Nel, If I could, I would be doing back flips and kicking up my heels! I got chills as I read your post. And I'm still grinning from ear to ear! Yippeee!! Hooray!! and any other interjection you can think of!! Lots of hugs and congrats!!! You made me so happy!
edited to add: If Julie were here she would be happy for you too.0 -
YAY Nel!0 -
Just checking in to see how everyone has been doing. We must be very busy living our lives since we don't post as much as we used to...and that's a good thing. Hope you are all having a great week and are ready for Halloween. The kids at our school dressed up for the PTA Harvest Festival last Friday evening, so no costumes tomorrow. However, we will be having a "Don't be a Zombie" jog-a-thon so I think the excitement level around here will still be pretty high. All I can say is it will be a CRAZY day in our office tomorrow!
0 -
Hi Linda, this is a crazy time of year. I love the weather though. Being hot most of the time with the AI, I love the cooler temperatures. Not looking forward to snow and ice, though. I'm doing good. Still exercising, 'trying' to eat right, etc. It's so hard. But I've heard loosing weight and exercising can cut risk of recurrence so I keep trying. We're all hitting our 2 year mark. Mine was October 11, the day of surgery when they said they got it all. In some ways it seems a short time ago and other ways seems like a long time ago. I hope everyone else is doing ok.0 -
I guess my automatic alerts for updates has gotten turned off again. I kept thinking about everyone but assumed no one was posting for the last couple of weeks. I finally decided to post myself tonight and looked at our thread. I can not believe that our sister Julie has passed already. I know her daughters will miss her terribly as she was all about trying to continue taking care of them and enjoying their time together. I admire her as I do all of you for fighting back against this heartless disease! I am so glad for those of you who are doing well-Nel, I am doing the happy dance for you! Grandma & Nel, I applaud your continuing to eat better and exercise.0 -
Grandma ~ I know what you mean about the heat. It has been cooler here this week, but today it's supposed to be 80 degrees. I, too, seem to have issues with the AI's. It is very embarrassing because even when I do things (like shopping), I sweat like I was doing something labor intensive. I hate it because it's mostly on my head and face, so my hair is literaly dripping on my clothes...not a pretty picture. But I will keep on taking those pills and sweating to keep the bad stuff away!
Bahamamom ~ So glad to hear from you. I still can't believe that Julie has passed. It was a shock to find out for all of us. Like you, I am hoping that her daughters get all the support they need. It will be a very sad holiday season for her family.
On a lighter note (oops this may be a heavier note)...I am glad Halloween is over. I think I ate my weight in candy and other treats here at work. I am going to have an appointment at the University of California cancer center in San Diego next week to see if I qualify for the metformin study. It's a double blind study where I may be assigned to take the drug or the placebo to study how it affects recurrance. The other part of the study is related to exercise. You are assigned to just receive weight loss informational materials, or...and I hope I get randomly assigned to the arm that will have a coach who calls and assists in getting the participant on a better path for a healthier lifestyle. I have been looking for something to "pay it forward" and as of right now, this is the only local clinical trial I am eligible for. I hope this will give me some incentive to do the right things to become healthier.
Sorry this is such a long post...you guys make it easy to spill my guts!
Have a great weekend and hope to read what's going on in your lives soon.0 -
Linda, I've heard (on this site) about metformin holding promise at cutting risk of recurrence. That's an exciting study. If you qualify, how long will you have to do it?0 -
Grandma ~ I am going for my appointment tomorrow. They will randomize me into drug/placebo and materials/counseling arms of the study. I will not ever be told if I have gotten the real drug, but I have heard it can cause diarrhea, so if I get it I will probably have that side effect since I am a "gut" person. I will keep you posted. The appointment tomorrow is 2 hours long and it takes 45 minutes to get there so I will have some time off of work. I am blessed that my co-workers have encouraged me to take part even if they have to cover some of my job when I am away. I think I will have to bring them a treat on Wednesday!! Hope you had a great weekend...just want to say that I hate the time change because by the time I get home it's pretty dark! Oh well, if that's my biggest complaint, I have to consider myself blessed!
0 -
Linda I wish you lots of luck on your participation in the clinical trial. I have not heard of the drug, but if it works I hope you get that extra treatment. And I know how much the exercise helps, so I hope you do get the arm of the trial that has exercise support as well. I have not missed a week of my exercising at the YMCA since I starting the livestrong program in January (except the 2 weeks we were in Hawaii). I have kept at the 3 times a week regime with 30 minutes on either a treadmill or an elliptical machine and then about 35 to 40 minutes on the 13 weight machines they have. It is so much easier when you have supporters. My original livestrong coach speaks to me still when she sees me and I have even heard her bragging about my progress to her new clients. It really makes me feel like I am accomplishing something important. Along with that my husband goes with me and that makes it more fun and we encourage each other.
On a different note I am having an early dinner tomorrow afternoon with several of my teacher friends who are still working at my old school. This is my first year retired, and it will be the first time I have seen most if them since June when school was out. I miss seeing them but not getting up every morning and being at work by 7:00.0 -
Linda - congrats for participating in the study! I hope it goes well for you and it does have to do with the greater good. You are very fortunate to have supportive co-workers. Looking forward to hearing how it is going.
Bahamamom - Good for you with the livestrong program. I did it here in Massachusetts and loved it. I didn't continue at the Y when it was done, mostly do to distance I went back to Zumba. But as I have sold my house and am moving in the next month, I will be able to walk to the Y from where we will be living. I do think there is a family membership at the Y in my future.
My house is sold, I have agreed on the price for the condo I wanted and that my kids like. So moving at the end of November. Although I am looking forward to downsizing it is still so very sad. It symbolizes so much for me and the kids. They are a bit cranky and I am trying to be patient, but alas I sometimes do go over the edge. And of course why not, court date for my divorce is two days before we move. Really why not!!! I will breathe and rely on friends.
My ramble for the night
Be well
Nel0 -
Hello everyone! T found something that works for hot flashes and those nasty sweats. Poise pads for hot flashes. Now before you read too much, they are NOT maxi or mini pads. They are body cooling towelettes and they work! I rub them on my arms and if I am really sweating, I rub them on my neck. Try them and let me know what you think.
Nel, you have a lot of changes coming. Don't forget to breathe.
Linda, good luck with the trial. I have never participated in one. Let us know how it goes.
I am getting my questions ready for my appointment next week. I get so nervous before each visit. I have a small lump that feels like a pimple. I hope that is all it is. The weather is getting cooler here but I am sleeping all night one and not waking up sweating. It feels nice.
My husband and I spent the weekend in Daytona to celebrate our 33rd anniversary. Our years together have bebe tough at times. We almost divorced but decided to stay together. He is now a blessing to me. The down side of this is I have no libido. I don't know how to correct this. I guess it will happen when it happens!0 -
Thanks for all the encouragement on the trial. I went yesterday and it was an experience for sure. I had to do the testing on the computer and it involved things that tested memory, dexterity and who knows what else! I was randomized into the group that will have personal support for nutrition and weight management and exerciste. I was very happy about that because God knows I need it! I will never know if I am taking the placebo or the real metformin. The study lasts 6 months and the goal is to lose 20% of body weight which is a drop in the bucket for me, but every little bit helps, right?
Bahamamom ~ I looked for a LiveStrong program in my area and there isn't one. I would love to be able to be a part of it. I hoope you had a great time with your school friends. I can't explain it, but school staffs seem to be a family unto themselves. I can't imagine working in the "real world" even if the pay would be better..ha! ha! Actually, I am quite excited that we are going to get a raise of 2.5%, which will be our first raise in 8 years. The thing that I am most grateful for is that the raise may cover the rising cost of my insurance plan! And by the way...I will NOT miss getting up early when I finally retire because I am definitely NOT a morning person.
Nel ~ I am glad you are finally going to get to move. The kids will get over their unhappiness about it and it's time for you (and all of us) to do what is best for ourselves both physically and mentally. I hope that the court date for your divorce goes as well as it hopefully can. I dealt with divorce when my father found another woman...or man-woman as we call her...divorced my mom after 50 years...yes, 50 years. The crazy part is that the black widow was divorced from her first husband, married my sister-in-law's father, and when he died, she moved in on my father. Yes...our family tree now goes straight up and down. My husband calls my brother "uncle daddy!" Heaven knows what other victims have been "had" since my father died 5 years ago. Or maybe she ended up with enough $ and houses from our family and she may have "retired." I realize how ridiculous this sounds as you read it, but hey, we have to have some entertainment on here, don't we?
Beth ~ I hope and pray your doctor appointment goes very well. I, too, am a wreck whenever I have to have a check up. Thanks so much for the info on the hot flash wipes. I will have to see if I can find them around here. I had terrible hot flashes with my normal menopause and when my MO told me I would now be in super menopause, he wasn't kidding! My hair actually drips sweat when I get warm and it's embarrasing. As for libido...what's that? I can't seem to remember!
Grandma ~ Hope all is well with you and thanks for letting me know the metformin trial is discussed on this site. I am going to research what has been posted.
Sorry for the long post, but wanted to "talk" to all of you.
0 -
Linda, Here's one of the threads I was reading where SweetCaroline2 spoke of the metformin trial. It sounds very similar to the one you describe:
http://community.breastcancer.org/forum/78/topic/790338?page=95#post_3689464
I hope you get metformin. I have heard that it suppresses appetite.
Bahamamom, It's encouraging to hear that you keep exercising. Is the weight still coming off? I've been in a rut or plateau, or whatever you want to call it. I know I need to increase my exercising, but I've always thought of that as a dirty word. But I keep trying. Hope your dinner went well.
Nel, So much happening all at once. Hope all goes smoothly for you.
Beth, I was at Walmart today and picked up some poise body cooling towelettes. I Haven't had a hot flash since I bought them, but will try them as soon as the heat comes on. Happy 33rd anniversary. Our anniversary is Nov. 8. It will be 39 years. Just like you there have been some very tough times. But the last 8 years or so have been good. I think once the kids are out of house the stress level goes down considerably.0 -
Hey Phyllis, How are you? Still in Texas?0 -
I really haven't had hot flashes. I just turned 59, and I really didn't have them 9 years ago when I went through menopause either. Now I will say that for many years before that I was always hot, but my husband and I couldn't agree on the air conditioner setting especially at night. He would freeze if it was halfway cool enough for me, so I sweated away many nights until the temperature finally got cool enough for me to fall asleep. Grandma, I have lost a total of 28 pounds now, but I have weighed the same thing now since early September. I reached a goal I wanted to achieve before we went to Hawaii, and since then I go up a pound or two, then down again. I have spent most of my life either dieting or needing to diet, so I really am happy just staying right where I am. I am like you in that some of those 28 pounds I gained during my cancer treatments, but I say they all count anyway. I also think that the closer I get to my ideal weight the harder it gets to lose. I use fitness pal app on my phone to track my calories and exercise. When I first started really working on my weight in February, if I did the same amount of exercise that I do now and ate 1200 calories each day, my fitness pal would say that I would lose 5-6 pounds in 5 weeks, but now when I eat the same 1200 calories, it says I will only lose .7 of a pound. So it looks like if I want to keep losing I will have to eat less or exercise even more. Don't get discouraged and give up though. Plateaus are okay; they certainly beat gains. I think if we can maintain for a few weeks or months and then start to lose again that we will be fine. Linda, so glad you got the nutrition and exercise support! Nel, hang in there. Lots of changes are coming your way, but change can be good too. Just focus your attention on doing what is best for you, things that help you or make you happy.0 -
Bahamamom, 28 pounds! That's amazing! Ok, I'm going to do it, too. I'm 18 pounds behind you. Maybe eventually I'll be like Nel and can zumba. I know Linda's going to be shedding some pounds with her clinical trial. And Beth keep up the good work and let us know how your appointment went.0 -
I zumba, but an not by any stretch the most active or the one putting the most effort into it! But I do get there and move and that counts for something
Be well
Nel0 -
Wow-- you go girls and your weight loss! That is wonderful. I have put on 10 pounds and frankly, i don't have the energy to get it off-- I am in a rut I think-- actually maybe even a depressed state. I have been horribly exhausted for some time and that gets me down…then a vicious cycle… I don't get out… i ride less (yes…me…not riding my buddy, hard to believe!) and then, i lay around and don't get exercise which gets me more down and maybe more tired. I do think I have been evaluating the purpose of it all but what I have lost is a bit of passion about life-- maybe time for a big change!!
I had my oncology appt this tuesday…long story short but I have been on a clinical trial and I think it has been causing me much pain-- too much-- so I told the research nurse last week I was going to go off of it. No sooner did that happen when the cancer center called and said my oncologist wanted to see me. I think she took one look at me and said-- we have to make some changes here-- no use going through all that chemo and getting rid of the cancer to have a life like this-- so we are doing a trial of estrogen to get me up and running and then, tamper me off slowly. I am a bit apprehensive about it but frankly, I am looking forward to the positive effects of hormones. The bottom line is that if there is still some cancer lurking in there somewhere, it will come back sooner but if there isn't then, the estrogen won't stimulate something that isn't there! Goodness-- clear as mud…
So I started two days ago, still have hot flashes and now headaches. I suspect it will even out in a week or two. But, I am feeling a bit less hmmm let me say I am feeling a bit more hopeful about life.
golly this was long, sorry…I am rambling….
I took on too much responsibility this past year and while I could say that it is others that put pressure on me-- its more ME that put pressure on me to be "normal" and fully functioning. I have to give it up-- there is and never has been much that is "normal" about me…LOL
Do you all feel like this at times?
Phylis-- where are you???
the Q.0 -
im here and typing on my phone with no caps oe much punctuation. ive been reading but cant post much. i havent said this before but docs sayim ned now. its hard to say that since it didnt last toolong last time. still in texas untin 1st weed in dec. love you all
0 -
Ladies...
Im sorry you all are here, but at the same time glad.
These forums are what helped me survive my treatments. I am part of the May 2013 chemo group aand just finished my radiation treatments.., 34 of them...
I just wanted to pop in and say... you will go through the physical ups and downs... and a LOT of emotional ups and downs.... but if a big baby like me can do it, anyone can. I cherish the relationships with the women in our May thread that we have created over the months. We feel safe sharing things here that our family members just cant understand. Unless youre going through it, you really cant understand....
I just wanna send out good wishes to you all. You will survive this! you will question it some times, but you will survive it... and be like me.. time to get life back to normal again!
Hugs to all of you! Hang in there!Lorrie
0 -
spellcheck or die
0 -
Good to hear from you Phyllis-- I thought you were on "weed" and laughed a bit at the typo. I have an iPhone and me and Siri do NOT get along-- she just cannot understand me…LOL. You should see the things she thinks I am saying!!
Glad things are coming along! Q0 -
Q-I am so sorry that you have been down. Hopefully, the estrogen will help you out. I don't know what the trial was that you were on, but it could certainly be the medication or even just the fact that you were on the trial that may have kept you focused on the whole BC diagnosis more than was necessary, causing you to feel bad. It is hard to be "normal" when you are still seeing doctors and receiving medications like the clinical trial would have entailed. I have to say that I am very much aware of my BC diagnosis and the effects it has had and will continue to have on my life. I also know that I am lucky in that I was able to retire this year. I had the minimum time in needed, and I definitely based my decision to go ahead and retire on the BC. Knowing that I could have a short time left really made me think about those things that were more important to me. Ultimately, I would rather have my time to spend with my husband and live happily on a little less money than to keep doing a stressful job and wind up dying before I got to do the things I want to do. I really do try to do the things that make me happy now. It is hard to have a great attitude when your future can be so impacted still, but my MO once told me that she has had patients who stopped wearing make-up and dressing neatly and seemed to just sit around waiting for recurrencies. According to her for those people, cancer had already won. We need to fight every way we can to keep that from happening to us!0 -
Phyllis, I hope that first 'weed' in Dec. is a good one. lol And yay for NED!
Quaatsi, I can't help but think of your sweet dog every time I type your name, that helped you get through your first cancer. And I know I can't quite relate because this is your second 'bout with cancer, but it would seem to me it would be very difficult to keep your mind on something else. All this takes a toll even one time through. You've probably already thought of this, but the symptoms you describe could be attributed to anemia. And like you and bahamamom, I'm wondering if the clinical trial you were on had something to do with it. I know while going through chemo we all learned a lot about blood chemistry and how being low in nutrients or electrolytes, or even being dehydrated can make SE's worse, including fatigue and depression. I know you're in the natural medicine field so this isn't new information and you may have already had all this checked out. I also think that chemo brain has something to do with it. I know for me, I never experienced depression before I was overdosed with steroids and then taken off of them suddenly with my last chemo tx. That depression that ensued was something I never want to experience again. I hope the estrogen will help, I know I miss mine. I've really started to age since starting femara.0 -
Its more of a loneliness from being alone in all this-- and it feels more alone now maybe because, I think that in some way, going through all the therapy we did, allowed us to "medicate" our feelings and now, that there is no therapy there is only several solutions-- "medicate" with something else to avoid the feelings or face it and look at it. I choose the latter and I guess this is a process -- a process beginning at an unknown place. And it feels lonely because no one else can go through this with you (with me) and I guess that's where I am right now. I know I will come through this- I have no doubt. And I know I will be stronger. But right now, its very painful.
Q.0 -
Quaatsi, I feel that way too. It is a very lonely journey. Even if we're surrounded by family and friends, if none of them have gone through this we are alone. I see what you mean about pushing ourselves to "normal" and fully functioning. I think we do that because everyone else expects us to be and we feel something is wrong with us if we can't. I get really frustrated with some of my friends, because they haven't changed and seem so shallow. Worried about things that don't amount to a hill of beans. But I just play along and try to hide my feelings. Half the time I don't hear what they're saying anyway because of the tinnitus so I just smile and agree. But they're tired of hearing about the things I have to cope with. That's why I come to these boards everyday. I feel so close to each and every one of you because you've been there through thick and thin. We have seen each other through good and bad, light and darkness. This is where we get in touch with reality and don't have to play any games or play act. We bear our souls to one another and I honestly feel that I can't live without your friendship. We're each still dealing with Se's of treatment that has lingered on. And (for some) with the Se's of hormone blocker. But we keep breathing and putting one foot in front of the other in the hopes that tomorrow will be better. I come here and find my friends and at times (like now) I sit here in front of the screen with tears coming down my face thinking about all the horrors we have faced. I miss my naïve self, but she's gone forever and I'm still trying to figure out who I am now. I miss Julie and I'm afraid. I truly hope the estrogen helps you and you can climb out of this lonely place, ride your buddy, regain your passion for life, keep posting here and letting us know how you are. I hope and pray that all of us can figure this out and can have rich, rewarding lives. Thank you for being my friend and helping me and I say thank you to all of you for being there.0 -
Thank you GrandmaV! I cannot tell you how much being able to write that this morning helped me to figure all of this out-- it's like I am able to climb out of the hole I was going into. I spoke with a friend --someone who gets it but hasn't been there, a rare person-- and she said that I do a good job of hiding the pain and that, others want us to be well for it tells them that they too could make it-- "if Diane cannot make, I certainly couldn't"-- interesting because I knew back in the first time I had lymphoma I had figure out that I had to be strong for other people's fear and that, in a way, they were going through something as well- cancer hit them only from a totally different perspective!
I think this has allowed me to seriously reconsider doing the estrogen-- I think it scares me too much to invite the cancer back. I will continue for a little while and see how it sits with me. Thank you for listening…
Q0
