Starting Chemo in Nov. 2011...anyone else?
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I haven't posted in a very long time, chemo took too much out of me. It's over, been over since late March. I'm halfway through 6 weeks of radiation and just started developing that painful rash-like condition this past week. Boy, does it hurt! My hair is growing back v-e-e-e-e-e-ery slowly, but it's finally having to part around my ears, and that brightened my day yesterday.
I've had a real struggle with depression through the radiation, and my ro is concerned because I don't have insurance for therapy. I figured I'd try you all, since there is no other place I know of that's as unique as this. You all have been and are so supportive. I'm having a terrible time with pain from arthritis, to the point of tears, and on top of the radiation (which kind of freaks me out), plus money troubles and boredom.
Has anyone got ideas for getting my mind off my troubles, coping with this mess?
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Julie, I hate the thought of you having to do chemo again. Did the surgery reveal something new? Did they tell you about this before? I'm just so sorry about that.
lots of hugs
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wrkn - I had a struggle with depression, too. My onco put me on amitriptyline 50mg/day back in January. It took it a while to work but it does help now. Therapy is not an option for me either. If you're not on one already, maybe an anti-depressant would help. I don't really know how to get our minds off our troubles, but I've been trying to be more alert to ways I can help others. We have some elderly ladies in our congregation and I try to call them on a regular basis, especially during this heat wave, to make sure they're ok, and if they need anything from the grocery store, or a ride to the doctor. Just little things that I can do. It takes my mind off things for a little while. I also try to spend time with my grandkids. My grandson is such a little character, he just brightens my day. He's 8 years old, has red hair and is so sweet and attentive, and has a big imagination and talks non stop. He spent two nights with us this week and wore us both out. (DH and me) I just love being a grandma. Someone on the forums suggested watching comedies, something to make me laugh. So I watch a lot of Americas funniest videos. I'm also working on my attitude, instead of focusing on my chance of recurrence, I try to remember there's a bigger chance it won't. I have to remind myself of that often. Money troubles on top of all this cancer stuff, is just so overwhelming. You're doing great though. You've accomplished so much. You'll be done with radiation soon and can put all this behind you. lots of hugs
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Thanks Susan trying to, I was sobbing in my one's office couldn't believe it
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Hi Everyone ~ It has been a VERY LONG time since I posted here. I read some of the latest posts to try and get caught up a bit. Julie, I am so sorry to hear you are having more issues. i will be thinking only positive thoughts and will include you in my prayers.
I have finished chemo and rads (about a month out). I saw the RO yesterday for the final visit with her. Things seemed to be OK, but like many of you I am nervous to even think about things being anything but OK. I will be seeing a neurologist for the neuropathy next week. It seems after chemo my feet and right fingertips have gotten worse. My MO says that shouldn't happen this long after chemo (2-3 months), so referred me to be examined. Have any of you had more issues with neuropathy after chemo? I will also see at PT who specializes in lymphedema to try and prevent that from happening...don't know if that is possible? The MO heard I was going to fly to Chicago for a family reunion at the end of this month so insisted I be seen and get a sleeve and gauntlet for flying. With the hot flashes I have it should be fun to wear with the awful heat in the Midwest. Thank heavens the PT said I could take it off most of the time. Oh well...this will be part of the "hot journey." So glad we are past the long, cold winter.
Hoping everyone is feeling good and I will check this board more often. That is when I am not busy with the rest of my 10 medical appointments ths month...or as the saying goes...how I spent my summer vacation!
Hugs to all...LindaP.S. Just realized this post may sound negative. I just always feel I can say anything here and you will all understand. Truly, I am feeling pretty good now and I am so grateful I had doctors who have done their best to get me to the treatment they feel will help keep me healthy. So, no more whining from me for awhile!
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Julie-I am so sorry that you may have to do more chemo. It looks like you had a pretty agressive treatment regime, and there were no nodes affected. That being said, I know you are a very strong lady and will find a way to get through this if needed. I will be praying for you and hoping for the best for you.
I remember when my onc discussed with me the choice of doing 4 TC's for 3 months or 6 TC's + herceptin for a whole year. The reason for the longer choice would have been to participate in a clinical trial. I couldn't see taking the herceptin since I was HER-, especially if it meant a whole year of chemo, but I was concerned that the 4 treatments of TC may not be enough. Anyway in the beginning I was worrying that I may need more than 4 treatments, but by the time the 3rd one came around, I wasn't sure if I could actually get through all 4 of them. I think we tend to pace ourselves and expect things to come to an end and work towards those ends, but ultimately, I know we all want to be and stay NED for the rest of our lives. Try to keep an open mind (words from my breast surgeon that meant a lot to me and got me through all this so far).
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linnihop-I would do whatever the doctor suggests about the sleeve and gauntlet. It may seem a little much or unnecessary, but it will be worth it if it prevents or even slows down lymphedema. I have had lymphedema since very early on. I tried to tell my surgeon that my breast and underarm areas were swollen and red, and he agreed that they were but told me not to worry about it unless it hurt enough to keep me from doing my usual activities of everyday life. He also didn't see any swelling in my arms, so he said I didn't need any treamtent. He siad that I could expect the redness and swelling to be there for a long time. But about a week after I saw him for that, I noticed my arm was actually swollen. At that poiint, I was deep into my chemo treatments, passing out frequently (I even passed out in his parking lot right after he told me I didn't have lymphedema) and trying to keep working as much as I could. I just didn't have the time or energy to get another opinion or go right back to him again for the same thing. Anyway, by the time I did tell someone else, it was my radiation onc. She set up an appointment with the lymphedema clinic, but they wanted me to finish the radiation first. So now I have to wear a very ugly, tight sleeve and gauntlet all day long, everyday. If there is some way to prevent it, I would definitely do what you can to do that. It is not a fun thing. It is a constant reminder of my BC. Plus, it takes time every day to do the exercises and manual drainage therapy the therapist taught me and to keep track of my arm measurements and get the sleeve on and off and washed every day. Sorry for the ranting, but lymphedema stinks.
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GrandmaV, nothing new from surgery no mets, nodes all clear and margins all clear, so they don't recommend rads. Additional chemo was mention with the possibility of mets or no clear margins, but never for decreasing recurrence chances.
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Bahamamom ~ Thanks for your words of wisdom. I do plan on wearing the sleeve and gauntlet when I fly for sure. I feel it would be stupid on my part not to, especially if there is a chance it can prevent lymphedema issues. I can only imagine how you feel about wearing the sleeve. I had a wound issue on my legs (suspicious for a second auto-immune disease...lucky me) and had to wear compression stockings for 8 or 9 months and HATED them! I really feel for you. The tightness and hotness of the material is so annoying and yes, they are so ugly. I especially hated that it was summer and even had to wear them on a cruise, but somehow we make it through. I hope you know I am in complete agreement and have total empathy for you. I am so hoping the big "L" doesn't rear it's ugly head. A teacher friend that I work with had surgery a couple of months after me and definitely has swelling. I feel so bad for her and anyone who has to deal with the physical and emotional aspects of it. The wife of another teacher I work with has one arm that is twice the size of her non-affected arm. Like those of us here, both made it through surgery, chemo and rads (me and one of the other ladies) and are now dealing with this. I would say it isn't fair, but then this disease doesn't seem to take fair into consideration. Please don't apologize or feel you are ranting...we are here to listen, care and help each other whenever there is a need. Hope you have a great weekend. (hugs)...Linda
P.S. I am so sad and sorry that your doctor didn't listen...that part really sucks!
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Julie, I'm sure you've thought of this, but have you considered a second opinion? I know it's hard to think about that right now. You're at a point that you just want to be done and don't want to stretch the time out. I have heard of others that have had chemo before surgery have to do more chemo after surgery, so thats not uncommon, but usually with a lumpectomy they do rads. My heart goes out to you. Whatever you and your doctors decide, I know you can do it. lots of hugs0
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Linda and bahamamom, I'm sorry you're having to deal with LE. It sounds awful. Cancer surgeries and treatments leave us so beat up. It seems like it never ends. lots of hugs to you both.
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Bahamamom and grandmaV, thanks and Linny and Bahamamom hang in there!
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All good ideas, GrandmaV - I've got all three of my boys with me for a little while (they're fully grown and here for the summer), 2 goofy dogs, and 3 elegant cats, so they do provide some pretty wonderful moments. It's one of those things about depression; there's plenty of good in the world, only sometimes it doesn't get through the gloom. I'm going to get in touch with the social worker at the infusion center and see if she's got some organization I can lend a hand to. I'm not a church-goer, but I know that there are scads of organizations that help out where needed, it's just a matter of finding someone who needs me. I have a feeling that might just do the trick. Work has always been a balm to my spirits.
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Julie - I am sorry about your news. I hope you don't have to have more chemo or more anything. I didn't have a recurrence this time, I had a new cancer and had to have chemo. I didn't like hearing those words either and hope to never hear them again.
Linda & Bahamamom - Try this link www.compressionsale.com/lymphedivas. They are decorated sleeves. I have occasional swelling and saw these. I don't own one but if I had lymphedema, I would purchase one (if they weren't so expensive!) I can wish can't I?
wrkn - I went through depression and occasionally get it now. I have lost some friends because of this diagnosis and gained some new ones. When I am in public, people hug me and encourage me. Take a walk or exercise as much or as little as you can. It really does help. I have started swimming again and it feels wonderful. Hang in there and we are here for you when you need us!
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Thanks all for your encouragement and support, I got a 2nd and 3rd opinion from my BS and her onc colleague, who both agree I don't need anymore chemo, so I will stick with them! No more chemo for me want to enjoy the summer with my girls who have missed out enough, since last Nov when I started chemo til this June when I had surgery.
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Julie-Yey!!!!!!!!!!!1 I know you are happy with no more chemo, and I am sure that you are enjoying your time with your daughters (now that you are feeling better from everything).
Beth-Thanks for the info on the sleeves. Unfortunately, I have to have one that is specially made because the off-the-counter ones are too long for me. I tried 2 different ones and neither of them took down the swelling, and the PT said it was because since the sleeve was really too long for my arm, it allowed too much stretch in the width of the sleeve. I keep hoping that I can eventually stop wearing it, but everything I read, plus what the PT said, was that it is a forever thing. On the other hand, I wonder why I never see anyone else wearing one of these. So many people have had BC, and I am sure that many of them have also had lymphodema with it.
I am getting away this weekend to go to my mother's 90th birthday party, then on to Myrtle Beach. It will be just me and my husband. I am so looking forward to the time off together. I can't help recalling the last getaway was 2 days after my cancer diagnosis. It was before I knew anything except that I would see a surgeon when I returned. I had planned a big trip to Universal Studios for our anniversary. It was also breast cancer awareness week, so I couldn't get away from the commercials, my own mind, etc. everywhere I went. I couldn't get in the water or even ride most of the rides due to having just had the biopsy. So I plan to have fun, fun, fun this time!
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Julie, what a relief! I'm so happy for you. Enjoy your summer with your girls.
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Bahamamom, thanks and u deserve to have fun too, so go for it, go on all the rides twice for me!
GrandmaV, thanks, I plan on it!0 -
I spent my morning in a most delightful way. I found out about some freebies sponsored by the Norton Cancer Resource Center near my home. This was not actually where I received my treatments, but I had to go there for lymphodema therapy for the swelling in my arm. Anyway, the therapist gave me a brochure that told about all kinds of things they offer, and the one for 3 free massages for the cancer patient and his/her caregiver really caught my attention. That sounded so nice after all the things our bodies have been through, especially now that we are on the mend. I also thought it was nice that they included my husband. Those that care for us are tired and deserve something special too. We had our first massages today, and now I feel great. I can't wait for the next one. I am so appreciative of this service. For the rest of you, you should check your local cancer resource center to see what else they offer. I saw lots of yoga classes, music & art therapy, and other things as well. They were even giving away wigs this morning to people who came in and asked for them. I never knew about that, but my insurance reimbursed me for mine anyway. Plus, not that I think of it, my sleeve and gauntlet was paid for by some grant that they had-even after they had to special order mine because the ready-made ones weren't fitting right. I never knew there was so much offered. Take advantage of anything that you can.
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Is anyone taking Arimidex? My onc gave me tamoxifen the first time and I didn't take it. After my chemo, she gave me a prescription for it again. I got it filled but was afraid to take it. When she realized that I had an hysterectomy with my ovaries removed, she gave me a script for Arimidex. I got it filled but I am still afraid to take it. Any suggestions for getting over this fear? I am in the middle of moving to NC. My husband is already down there and I am finishing dealing with things in Indiana. I don't want to start something that will affect my body. I am already in a frenzied state with night sweats and hot flashes.
I have started swimming 5 days a week at our YMCA and I can finally raise my hand above my head! It has been forever since I have really swam. I do lifts with the styrofoam water weights and I am feeling so much better. It has been so hot here in Indiana. I hope each of you are doing well this summer!
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Beth - I have been taking Arimidex now for about 5 months. I can't tell that I have had any side effects from it. My onc had said that they would take about 6 months to start. I have been hot a few times, but honestly, it is 100+ most days now, and even inside, my air conditioner can't keep up to keep the house nice and cool. So I really don't think it is the pills. Also, I had forgotten that the biggest side effect with these is joint pain, but when I saw my onc about 2 weeks ago, she reminded me of it. The only pains I have had are in both my thumbs. Before, when I was having chemo and for what seemed like a long time after it, I had lots of joint pain. At the time, it seemed like it would never go away, but finally, it did. Anyway, I really don't have any pain anywhere except my thumbs. But they both are pretty sore. They pop when I bend them at the joints, and much of the time I can't bend them (too painful). I was low in vitamin D, and I have been taking supplements, which is supposed to help. I think it very well may be something else since that is the only joint pain I have and during/after chemo when I had lots of joint pains, it was mostly in my legs, neck. So I am pretty sure that I don't have any side effects from the Arimidex.
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Hello all, long time no post. In my dilemma of not knowing whether to have more chemo or not, got some really great news. It turns out that my old onc accidentally put that I had a mx on my records when I actually had a Lx, which means I need rads not more chemo. My new onc agrees with me in that I've had more than enough chemo and agrees that rads would be the next step! Thank u all for your support through the confusion!
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Hello All-
Its been an incredibly long time since I have posted! I have been reading to catch up and I see that Julie-- you went through a scare! I am glad it all turned out well. And Linnyhopp-- I wear a compression gauntlet at times. I get a bit of swelling when I ride my horses so I try then. It is not uncomfortable-- and I say this when it is over 100 and high humidity here!!
I have been either working or playing-- hard. I went camping about 3 times so far this summer. Spent a week in Flagstaff where it rained most every day. I even made it through a lightning storm sleeping in my tin can (horse trailer!!) where I thought I could really not make it through. I sent a text to my husband telling him how much I loved him (just in case he didn't know and I didn't come home). He sent me this thoughtful reply-- "just feel Quaatsi's paw in your hand". I cried and cried. Quaatsi was my most beloved dog who stood by me like no other when I went through my first cancer back in 1987. She died of bone cancer and I often thought she had taken my cancer from me. "Quaatsi" is Hopi for companion.
But, I made it through and am here. Taking Tamoxifen. Having the hot flashes and all that. But I have a date for when my Chemo ends--22 October!! so I am holding on!
Hope all of you are doing as well too!
Q
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Quaatsi ~ Oh my, the part of your posting about your beloved dog, Quaatsi, brought tears to my eyes. I, too, had my little dog, Gracie, spend my chemo time with me. We had just lost our other dog right before I was diagnosed and felt like I just HAD to have another dog right away. (My DH and I have had dogs who we considered "fur children" since 1976 and the house was too empty without one). Well, it turned out that Gracie, who is now 2 and quite a lively terrier mix, was my special friend when I was home alone and feeling pretty awful. I told everyone she was my "ChemoSabe!" Like you, I miss every one of our special dogs who are not longer with us. Thanks for sharing. By the way, I went to Chicago and did wear my sleeve and gauntlet to try and avoid any swelling from flying. I was dreading it but it turned out not to be a big deal. Thankfully, at least this time it seemed to have worked even in the 104 degree heat! I work with a couple of people who have had BC and developed lymphedema. I hope and pray I don't develop it. It's really a tough thing to deal with. I just wish there was some way for all of us to avoid it...well that and of course having a BC vaccine would be the absolute best so no one would ever have to go through treatment or side effects.
I am still having Herceptin until November and am taking my generic Arimidex daily. So, like you I am dealing with the hot flashes, etc. However, I am more than willing to keep doing everything possible to avoid further problems. So glad you have an end date for your chemo. That's one thing I truly don't miss!
To everyone who may read this...thanks for sharing all you did when we were all doing chemo at the same time. I depended on you guys to get me through and you did with all of your sharing, knowledge and kindnesses. You are an amazing group. Hope some of us will continue to post to this board so we can know how great we are all doing! Hugs...Linda
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It's so good to hear from all of you. I think it's amazing that we have this incredible bond. I feel very close to you all and have been wondering how you are. Quaatsi, and Linda, I can relate to your feelings about your dogs. I've had some pretty great dogs myself. My little "chocolate chip" has been my constant companion through all of this. He's a little rascal sometimes, but he's very attuned to my moods. He just seems to know when I need some cuddles.
Quaatsi, I didn't realize you were doing chemo, still. You've really had a long haul. Like Linda, I'll be on herceptin until at least the end of October. I'm going to ask my onco next time I see him, how many more I have left. I don't seem to be having side effects from femara, except for the hot flashes. My onco told me to try 1000mgs of vitamin E a day and I do think it's taken the edge off, but I'm still flashin. I'm wondering what the winter will be like. Maybe I'll actually like the cold weather now.
I was really glad to hear that Julie doesn't have to have any more chemo. I thought that was a little much. Have you started your rads, yet?
I haven't been swimming once, yet this year. Beth makes it sound so inviting. I guess I better hit the pool.
Bahamamom, I checked with our local cancer organization and they offer massages, too. I'm signing up, thanks for the tip.
I still have tinnitus. It's not nearly as loud as it was at first, but get's so annoying. It get's louder right after a herceptin treatment, for a few days and then goes down to a more tolerable level, until herceptin again. So, I still have hope that it will fade out some more once herceptin is done. I'm having a terrible time trying to loose weight. I keep loosing and regaining the same 5 pounds. Hopefully, once this heat wave is over, I can get back to walking regularly again. Even early morning is just too hot.
I hope we hear from so more of our group. I hope wrkn has gotten some relief from depression. I'm still struggling with trying to figure out who I am now. I have the most luxurious, curly hair. A side effect I really love and hope is permanent. I have taste changes that I thought would go away but haven't. Some of my favorite foods are no longer. I didn't used to like really spicy food, but now the spicier the better. I used to crochet, but have no interest in it now. There's a lot of other things different. It's strange. Thanks to you all for being amazing.
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GrandmaV, not yet going in tomorrow for my x-ray and tats. I'm thinking I will start next week or so? I'll ask tomorrow. Just relieved no more chemo!
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I had a bilateral diagnostic mammogram and ultrasound yesterday. I'm happy to say I'm still cancer free. Next mammo in 6 months. I'm still getting herceptin every 3 weeks (I think I have 4 more) and taking generic Femara. I'm feeling pretty good, but have no stamina. I try to tackle projects that used to be a breeze, but find I can't accomplish as much as I used to. But I think that will get better with time. Hope everyone else is recovering nicely and those still in treatment have few SE's.
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Grandma - I am so happy that you are still cancer free. How was the pain/comfort level of the mammogram itself? And why did you have a diagnostic mammogram and ultrasound? It was my understanding last year that the first one is screening (the only kind I had ever had before), then the diagnostic one comes only if there is something showing up that they want to know more about. And then, after the diagnostic mammogram, if needed, they would do the ultrasound to rule out cysts. I am trying to learn as much as I can before I have to get mine next month. I don't want to overreact, but I do want to know what is going on with my body. I am not looking forward to having my first mammogram since my 9/28/11 diagnosis. My birthday is September 24th and that is the day I have scheduled my mammogram. I have heard a lot of people say that it hurts (after the lumpectomy), and I can see where it might as I am still swollen and more sensitive in that breast. But my real concern is the results of the mammogram. I guess it will always be that way for us from now on.
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bahamamom, I have fibrocystic breasts, have had for about 12 years. I have lumps that come and go, so I asked for the bilateral diagnostic mammogram and then an ultrasound of the cancer side and also an ultrasound of the surgery site, because if you have any leftovers thats where it usually occurs. My PCP is great, she will pretty much order any test or scan I ask for. She's the best doctor I've ever had. I had a diagnostic mammo and ultrasound of the cancer side last April,(a month after radiation) too. I wanted something for comparison. As for the pain, about half of the cancer breast is still numb from surgery last October, so I didn't have any pain. The good side was more uncomfortable. I didn't have to wait for the results. I let them know how anxious I was and the radiologist came in after the ultrasound to let me know I was still cancer free. I got copies of the films both times and discs of the ultrasound to take to the BS October 1 and will get her opinion as well. You're right we will be concerned from now on. I may opt for a mastectomy later on if this gets to be too worrisome, but for now I'm happy.
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GrandmaV, congrats!
Had rads 3/36, only 33 more to go, whoopee! So far so good, just a little sore at the scar sight, otherwise no real SE's yet.
Bahamamom3, I agree with u, when I had my 2nd mammo prior to surgery, I was nervous, especially since they told me my tumor didn't shrink after all that chemo. At least it hadn't spread anywhere.0
