Starting Chemo in Nov. 2011...anyone else?
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I was talking to my kids about how they get mean and argue more with each other when they are sick with a cold or allergies. My son responded at least I don't lose my memory like you!
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Claire ~ Wow...a University lecturer?? You win the prize for the least convenient occupation while experiencing chemo brain. **Note: I couldn't come up with the word "occupation," so I just said to my daughter, "what's the word for when you work somewhere?" Sheeesh!0
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Hi Susan, I'm sorry to hear you're having such a tough time. It's scary to have gone through so much and to feel like you can't control what's happening to your body. Menopause is tough enough. Throw surgery, chemo and hormone suppressants into the mix and it's no wonder we sometimes feel we're in a living nightmare. I'm having a hard time coming to terms with how I feel right now too. People keep reminding me how lucky I am and I do feel very fortunate, but the constant muscle pain and stiffness is wearing on me. I guess we have to stop and remember what our bodies have been through and not expect things to go right back to the way they were. Someone else said that time and patience were their new words and I agree. Be kind to yourself and try to find things that help you relax and relieve stress. At the recommendation of my MO, I had my first acupuncture treatment today. It was very relaxing and enjoyable. I hope you and your husband find a way to communicate your feelings and work through this tough time. Do you have a sympathetic oncologist? Perhaps he/she could offer help getting you through this rough patch. I haven't started Tamoxifen yet, so can't speak from experience but I hope if we can hang in there, with time things will settle down. Just remember it's okay to say I can't do this by myself and I need help. I hope things improve and wish you peace and healing. Take care xoxo0
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Hi All,
I haven't been here for a few days, so much to catch up on.
Sueshane - hope things even out a bit with your husband, this is such a tough time for all of us. I find it hard to knoiw if it is me reacting or the cancer and treatments.UGH
Sandyland and Claire, Neither job is it good to have chemo brain. Patience I guess but it is frustrating. I am an Executive Direcotr for a small non-profit. My Board is aware and very patient, not many of our members know. I just say when I amon the phone witht hem, "oops on overdrive, big event or fundraiser coming up, we all juggle too much don't we" We do have a big fundraiser coming up inJune, so that will be a major coming out party I do beleive. I will still have little or now hair and haven't worn a wig to date, so we will see.
I had my second AC yesterdaya nd felt like crap last night, just worn out and my head wierd. Feel much better this AM , but I know it will be up and down for the next 4 or 5 days. I met with the NP formy MO yesterday and asked her about follow up when thru witht this round and then rads. Becasue I will have more treatments with herceptin , 40 or but divided by 3 for the triple dose, they will not do any scans or follow up until 3 months after the herceptin. I paniced. Thinking is nothing had spread before treatment, that the likelihood of anything spreading while I am intreatment and responding well, there will be no need. If I had come in with mets, they would handle it different. I am at Dana Farber and trust them, but really I am in mode for daily scans. I had a cousin woth me who works in the medical profession and her H is an MD, and she assured me it makes sense. I had a mind set for follow up to begin in the fall so I am sure that is part of the issue. I meet with the MO in three weeks and will ask him as well. Are there others in the same situation.??
Rambling as I do on these posts. Chemo brain, I can't get to the point brain.
Gentle Saturday
Nel
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Hello everyone and it feels so good to be back!!! I don't know why I don't come to visit my friends when I have issues instead of trying talk with the people who have no clue!
I too am forgetting several things and words. Or like most of you, I'll be talking and someone will correct me because I said a totally different word. However, there are times when my husband says, "Where is..." and I give the correct answer. I think he is testing me.
My eyebrows are coming in bushy and I think I may shave them. My eyelashes are coming in blonde and my hair is black with gray circles. This is going to look so funny but it is okay.
I have another issue with husbands and I hope no one is offended but we are all friends. I don't like for my husband to see me and we have not been intimate since I started chemo in November. I am so thankful he is standing with me during this time but I want to be with him intimately again but I am so scared. I don't like the way I look and I know that he doesn't care about that. He tells me I am beautiful anyway. Is anyone else experiencing this same problem?
Thanks Friends, I have missed you!!!!
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Nel ~ I have been told that after my radiation is complete (I am 6 in of 33) I will see my MO every 3 months for the next 2 years, but that there are no tests that effectively up my odds for finding any new cancer. I was told that clinical tests show women who get preventative whole body scans, etc do not have a higher rate of detection. Our plan is that I will just report any new pain/symptoms to my MO and we will chase those down as necessary :-/ I am not a huge fan of this plan, but truthfully, I don't really want to be getting unnecessary MRI's all the time either. There really isn't a right way, I think it depends on the patient and the doctor.
Beth ~ I have dealt with this intimacy issue. Like you, I have a fabulous hubby who has been with me throughout this wicked ordeal. After chemo started, I just really never felt good enough for sex and my DH understood. A couple of months into chemo, however, I brought it up to him because I felt so bad. I was brutally honest about how my crappy self-image (totally new for me - brought on by cancer tx) was causing me to keep a distance between us. I just told him straight up "My body is wrecked, I have scars, uneven weird looking boobs, I'm puffy, bald and have no eyebrows! This doesn't exactly make me wanna put on a cute nighty and seduce you." After he finished laughing at me (I wasn't trying to be funny), he put his arms around me and just told me that he simply did not care about any of that. I decided that it wasn't healthy for either of us to let the gap between us continue to grow, so I just sort of forced myself not to think about how I looked or how I felt about it. It was different, for sure, but it was also great. I missed being with my DH and being intimate again immediately brought us closer than ever before. My advice...just do it. I just had to get out of my own head and stop assuming that he felt about me the way that I felt about myself.
Good luck
SAN
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Beth-I know how you feel about wondering how you could possibly be attractive to your husband now that your body has changed so much. We don't even look the same as we did before, and besides all the obvious things like the hair loss and weight gain and scars, there is also the effects that all of the treatments have had on our bodies as well. You may remember my posts from a few weeks ago about my husband starting up an emailing relationship with an old friend (a woman) that he hadn't seen in 35 or so years, not since they were late teens, early twenties. That was especially hard for me because even though she may be 500 pounds now and have warts all over her face, I believe that when he thinks of her, he thinks of the 16 year old blonde that he used to run around with in his hometown. So here I was feeling very unattractive anyway when I found out that he was emailing back and forth on a daily basis this "olf friend". Anyway, when I asked him about the emailing, he insisted that he meant nothing more than to communicate with her about their families, their childhood memories, and news about people he used to know that still lived there. He also kept trying to reassure me that he loves me only, always has, always will. Needless to say, it would have been hard under the circumstances to take him for his word over that anyway, but it was even harder for me to accept because of how very insecure I now feel about my body. So yes, believe me when I say that I do understand how you feel about having him see you and being intimate with him. But after several months of not being intimate with him, I can tell you that when I finally did feel like having sex again, it was very wonderful. I truly believe that he doesn't think about my new appearance, that he just thinks of me being me, the same me I have always been. I wrestled with the idea at first of trying to decide if I should wear my wig or at least a scarf and how could I hide all my scars. But I thought about it. I have a huge scar from my belly button all the way down from C-sections. He never said anything or appeared to feel anything different about that, so I decided maybe this would be no different. I hope you will be able to overcome your fears enough to start a physical relationship with your husband again soon because I know it will make you feel closer. It sounds like he has supported you in many other ways throughout this ordeal, and I believe he wants to support you intimately as well. Just do it!
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grandmaV and others, you have totally saved my life tonight. i have been contemplating going for an alzheimer's test ... the kind that tells you if you have the gene or even to see if i already have alzheimers. my father died in his early 70s with alzheimer's and my sister and i are getting ready to put our mother into a memory care home. she's 92, but still. i'm now almost 5 months PFC, but i'm still making mistakes, and some of them are exactly what you've all described. i especially laughed at some of the mixed-up words, like wanting to say back, but saying black instead. drives me nuts! i can't multi-task as well either and it's taking me sooooo long to do things i used to do more quickly and more accurately. and i keep losing things and then i panic. i always find it and usually it was hidden under something, but when all these things add up, i get so scared and then depressed and then i just get crazy! seriously, without reading what you sweet ladies have written here, i would probably worry myself straight into alzheimer's! ha. thank you for all the helpful information and grandmaV, thank you so much for the link.
also, grandmaV, did i miss that you were on femara and not arimidex? did you try arimidex? i'll be starting it next month, and i want information before i agree to it.
again, thank you all for the info. maybe now i can remember where i parked my car. j/k ha!
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YaYa ~ I totally relate to the post you just wrote here. It is kind of scary sometimes. I had lunch with my brother today and said the wrong word at least 4 or 5 times. Fortunately, my brother understood. He said he had the same issue when he had open heart surgery a couple of years ago from being on the heart bypass machine. He said it gets better, but once in awhile he still notices it. Hoping we get past this as well. I am having enough issues trying to keep my blood counts up and waiting for my hair to grow...don't want to go back to work and really look like an idiot! Thanks to all of you who have posted that you have dealt with this and offering your experiences. Wow, this BC really does affect the whole mind and body! Happy Easter to those celebrating tomorrow! Linda
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Ya Ya-Here is one perfect example of chemo brain. I just read your post, knew I wanted to send a comment back to you about it and somewhere between clicking on the post a reply and writing your name, I forgot what I wanted to reply to. Oh, yes, it was about the Arimidex. I have been taking that for about 5-6 weeks now, and so far I have felt no side effects. From what I have read, it seemed like it was the safer of the ones for postmenopausal women, and my doctor said that the side effects are not usually showing up until about 6 months. So I may or may not have them later, but for now, no problems at all. I woundn't even know I was taking them. She did order a bone density scan first because I think it may possible affect your bones. She said that if I had osteopenia, she would give me something else, but my scan was f ine, so no problem there. I figure that even if I have some side effects later, I finish radiation in 2 weeks and am feeling lots better now that chemo is over, so I want some time without having to worry about side effects right now.
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Happy Easter Everyone--Hope you feel like the Energizer Bunny soon!
Q
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Hi all,
Happy Easter! Hope you all are doing well. I got my port out friday in my surgeon's office, took about 1/2 hour. I kept my port, tubing and all and it now has a place on my kitchen windowsil. I want to use it in a piece of recycled art.
We had a terrible scare with my husband last week. he's been having back pain and he went for an x-ray--they said they saw a lesion on his spine and the radiologist was certain it was cancer. He got an MRI and it's jsut arthritis. He didn't tell me about any of this till it was all over but spine cancer has a prognosis of about 3% survival, so he was thinking he had about 3 months before he was immobile and maybe a year to live. Wow. We are grateful for arthritis.
I start rads this Wed 6.5 weeks of them. My RO said that I'd need them even with bmx/recon following because of my positive nodes. he won't boost, though, at the end, which I'm happy about.
Start tamoxifen Wed as well. My daughter's 30th birthday;I hope I'm giving her a good b.d. present by being here for a while.
Chemo brain is a pain but now that my students know that I had b.c. and was tx for it when I make a word faux pas I just say "damn, chemo brain" and they laugh.
XXOO
Claire
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Nel - I hope your next AC will be more tolerable for you. Do you have 2 more? About the scans, My onco won't order them either, unless I have a symptom to warrant it. He forgets to order the scans and tests I'm suppose to have. I had to remind him for an echo-cardiogram before I started herceptin and I've yet to have a bone density scan. Maybe onco's get chemo brain, too, through osmosis.
YaYa - I'm glad the link about chemo brain has helped. I know I was relieved to find it. I started femara last Monday. And guess what? It can affect memory too. By the time the 5 years are up, I probably won't even remember why I'm taking it. I didn't try arimidex. My onco likes femara for his patients , he said he thought it had less side effects. But he also said if I have a problem with it we can try something else, but that they all work about the same way, with just a little difference in formula. So if I can't tolerate one, we'll try another.
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Claire, Congratulations on getting your port out! That has to feel good. When you get the art done, maybe you could post a picture of it?
Who would ever think we would all be grateful for your husband to have arthritis. I'm thankful, too, that it wasn't cancer. That would have been so terrible for you both.
I hope rads and tamoxifen go easy on you.
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Thanks GmaV. Any advice for rads you can give is appreciated, even though I know we are all different. I'm more afraid about lymphedema than anything else but because of my fitness and build my onc. says I have about a 15% risk, which I'll still take since I want to do everything I can to wipe this out. He said living at 7000 feet all my life might also protect me a bit because of good circulation and pressure adaptation. I'll choose to believe him
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claire, YAY for arthritis! as for rads, there is a lot of advice on the rads boards that helped me a lot. i used aquaphor a lot and toward the end, my RO prescribed silvadene. honestly, i think the aquaphor (although it is sticky and hard to deal with) is best. i tried just about everything else and finally just stuck with aquaphor. you'll have to be creative to keep it off you clothes. i found cheap little cotton camisoles worked well. sometimes i just wore a cotton t-shirt under my clothes. good luck!
and speaking of chemo brain ... i finally found the remote for my security alarm system. (i use it constantly since my home invasion when i was at home last year!) it was in the dryer. i must have picked it up with a load of laundry and washed and then dried it. well ... it doesn't work now, but at least it's clean! gotta laugh sometimes!
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There's a lot of "funny" business going on. The chemo brain and all!
Good luck to all who are starting rads. I have a question, why are you doing rads after chemo? Did you have surgery before chemo? I had them 3 years ago with DCIS. I cannot imagine going through chemo and now doing radiation. I could look back at the posts but I am getting sleepy and I think it will be easier this way. I think all of us need to exercise our brains and I know I will forget what I was looking for if I go back three pages!
One of these days, I am going to start at page 1 and read through our experiences again. Have a good evening!
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beth, i believe that doing rads after chemo is just another weapon in the fight, especially with her2 positive. it was never questioned with my diagnosis even before we got the oncotype test back. we pulled out all the guns!0
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Claire-so happy you got your port out-Congratulations!! I got my PICC line out and can't even imagine how great you must feel. My friend had a port and I was able to avoid one after a staph infection and got my PICC line. It was a life saver but a pain to keep clean and dry. I can lift my arm over my head now too-wasn't allowed to do that and still catch myself being afraid to lift my arm. Also so happy that you and your husband got good news about the arthritis! I know after having my CT scan and them telling me I have a cyst, nothing better then looking at our problems that are getting to us and being thankful they really aren't so bad. I was thankful for a cyst and arthritis, which is horrible (I have Rheumatoid) beats a tumor anyday. I often wish I only had Rheumatoid......
I too have the chemo brain and have such difficulty finding words and remembering names....makes me nervous that I can go back to work and do my job...Have to try to challenge my brain a bit more this week.....
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Tipnas and Nel,
Thank you for your encouragement. I wish I could just sleep for the next six months, wake up and be back to normal. I guess we have to go through trials in life- just thought mine would be different. Things could definitely be worse. My neighbor who is in his late 50's has two prosthetic legs and was out cutting a limb off his tree today. He said he will not give up- too much left to live for.... Talk about inspiring....
Thanks for listening,
Susan
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Beth-I had a lumpectomy, not a total mastectomy. My understanding is that if you have a lumpectomy and radiation, it is supposed to be as effective as having a mastectomy would be. In fact, most surgeons will not do the lumpectomy unless you agree to radiation as well. Mine calls it the package deal. That and hormone inhibitors were supposed to be my only treatments, but everything changed when the surgeon found a tumor in my lymph node. That was when chemo was added to my plan. And the reason they do chemo first is because chemo is treatment for the total body and radiation is treatment for a specific area only, so if any cells have escaped into the blood, bones, or other organs, the chemo will kill them more quickly, without having to wait for the radiation to be over. As for the ladies who had mastectomies, they will have to tell you why they are having chemo and radiation. My guess is that their doctors may have thought the cancer had spread to the chest wall beyond their breasts. One thing I have learned from reading everyone's posts is that there are many, many different things to consider for each person affected by breast cancer.
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Beth, I was dx with ILC, which has a tendency to hide from regular mammos and ultrasounds too. Since i had positive node involvement, I wanted the whole shebang: lumpectomy and then chemo. Rads are for the positive nodes and to knock out any cells that a bmx can't get (there is still some breast tissue left even after an mx). I don't want to have to worry about ILC hiding from any more mammos or ultrasounds, and I have very dense breasts, a double-whammy of trouble since all BC can tend to hide in that kind of tissue. I had FIVE clear mammos for five years, and found my lump on a random BSE. I'm having a BMX and immediate recon after rads, after my skin recovers, which will probably be 6-8 months after rads are over according to my PS.
Claire
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Beth ~ I have seen a ton of different treatment combos on here. I had a mastectomy (left), followed by chemo, but I also have to have rads (33 treatments) due to my crummy margins. I then have to go on Tamoxifen. As far as I can tell, I'm having every single treatment there is :-\ I'm grateful to be able to fight this cancer on every level, but I have MAJOR treatment fatigue. I can hardly drag myself to rads every day now. I'm so tired physically and emotionally at this point. I was diagnosed in August, had my surgery in Sept and started chemo in Nov. I'm so tired. I am hanging on until the day rads is done and my treatments officially stop. I will not do reconstruction until at least Nov, so I should have a nice break. I can't wait!!
SAN
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I am having everything too. I was diagnosed after a sharp pain got my attention. All tests negative....evidentally I was diagnosed after bx with lobular cancer which doesn't image on mammo or Ultrasound. I had all my yearly testing....I had an angel. A Dear friend that had pain, ignored it and two years later had breast cancer everywhere. Knowing about her pain it made me pay close attention to my sharp pain. The doctors were all in shock over my positive bx. I was blessed as originally my cancer, which grows in layers, was thought to be 4-6 cm. After BMX the pathology report confimed it to be 3cm. Unfortunately it was also slightly in 3 lymph nodes. Since mine didn't image I wanted a BMX and protocol per Memorial Sloan Kettering, and my Oncologist at SMG agreed that I needed chemo and Radiation. My recurrence chance, at the site (chest wall) is 12-17%...after radiation that number goes down by 75% to 2-3%. I like those numbers better and have a lot to do yet....so onward I go.........I am so exhausted from the chemo and have a month until my surgery....just taking any rest I can get. Yesterday was a total PJ Day.
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Boneseye , Sandyland and All,
Good morning. Treatment fatigue, I get that. Today is day 4 following A/C on Friday. Just really pacing myself , getting done what I need, but no over extending myself. NAPS. Not sure if I am tired cuz of SE's of treatment, getting thru this whole process, depressed whatever, not sure it matters. Again NAPS.
2 more A/C treaments, can't wait and then onto rads. Toward the end of June is my finish line.
Has anyone heard of the warrior dash, this crazy what are you nuts event. Tried last year, but couldn't finish, problem with my foot. I think that that is what this process should be called. The warrior dash, we may not always be dashing, but no quitting this race.
Gentle day to all
Nel
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I love all the chemobrain stories and you have no idea how many times I hesitate as I type now, or read back over it and correct myself! Just last night, I was making quesadillas in my quesadilla maker and kept forgetting to put the top tortilla on! What a mess! You'd think I would only do it once, but NO! My family just laughed and it actually felt good to cook for them for a change. I had a rough week or so after my last Taxol, but things are improving a LITTLE bit every day.
Met my RO last week and liked her very much. I will have my simuation next week and then probably start rads a week or so after that. She gave me a lot of time and info, which was overwhelming but good. Relieved alot of my fears and yet made me a little more wary of everything. I also was encouraged to chat with a genetic counselor due to my mom's history or thyroid cancer...apparently there is a link between DC and thyroid called Cowden's syndrome, so I am researching that. It threw me for a loop a bit but that's okay. Just gathering info at this point...for me and my kiddos.
Sue, I am so sorry you have had some issues with your husband but glad to hear things seems better This whole journey is so taxing in many ways.
Bonseye, your story sounds much like mine, since I had ILC as well. But mine was a little reversed. They thought my original tumor was about 2 cm and it was almost 6! And all through my right breast. My ro has explained that recurrence is about 30% without rads and drops below 5% with them...it's worth doing to me!
Naan - cogratulations on being halfway! It does end! Tomorrow is 2 weeks post last tx. And I haven't been beyond that before..new territory! Hope the SEs continue to fade. Although, meeting with my surgeon yesterday, she was the first one (in the medical world) to admit that some take 6 months to completely go away. Especially the fatigue. I've heard that from so many living it (especially here), but not much of that from the docs....they say 4-6 weeks. I think I will enjoy the summer in recovery!
Have a wonderful day, all.
Andi
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Sandy,
You've got the same tx as I have. When do you start tamoxifen? I start rads and tami tomorrow...and just shed some scared tears over both. You know don't know what to expect, tired of being touched, tx'ed, taking drugs.... and I'll have both my bmx/recon after rads are done, probably around the holidays, like you.
Claire
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Thanks for sharing everyone. Nel, this does seem like the warrior dash. I have got to quit being so down and start being on the up side. I seem to be down when I am at work but I have made the decision to take the month of May off to do some serious praying and thinking. I also have my surgery on May 17. I hope my implants are softer than these expanders. They do feel like weights on my chest! I was supposed to start Tamoxifen but it is being delayed since I will have surgery next month. I would have to stop it anyway.
I am taking a friend to her onco appt today. She has recently been diagnosed with BC. I am thankful to be able to help someone else but also scared for her. She is just entering our world. I will be able to give her several tips about treatment since being with all of you.
The sun is shining here in Indiana and it is a little bit chilly but still a great day to enjoy the sunshine!
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Claire - There are so many different oils, lotions, and creams that different ROs recommend. It's all so confusing. My RO only wanted me to use emu oil and that worked great for me. He also told me to wash it off at least 2 hours before treatment, which I did. Evidently you don't want any oils, or moisture on the radiated site at treatment, because it can amplify the skin effects. I was able to go right home after treatment and put oil on and then again at bedtime. I did use some hydrocortizone cream for the itchy parts at times. I bought a package of 5 of mens tank top cotton undershirts (wal-mart) to wear under clothes and kept it tucked under my breast to keep skin off of skin. The first two weeks I also wore them under my bra and then stopped wearing a bra after that and just used those undershirts under clothes. I was able to start wearing a bra about a week after rads for short periods of time, but now (2 1/2 weeks out) am able to wear it all day, but I'm still wearing those undershirts, because I'm still using the emu oil. The redness is all gone now except in the boost area which is still peeling. My skin never hurt and I never had open sores, so this worked great for me. I did have some shooting pains at times inside the breast and it became very swollen and stiff, but that is resolving.0
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YaYa , That's so funny about your alarm remote. I've spent more time walking around in the house looking for things that end up being in plain sight. I too washed something that I normally don't wash. When I go for my daily walks I always put my drivers license in my pocket to have I.D. on me and usually put it right back in my purse when I get home. But I forgot and it got washed. It held up pretty good though. I think the only thing we can do is laugh about it and go on. I didn't feel so bad about the drivers license thing after my husband washed his whole billfold. I don't know what his excuse is, but at least I have one.0
