Who is starting chemo in September 2016?
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Hope everyone is well. My last round of follow-up appointments was uneventful (RO, MO). One more round of Herceptin to go!
The neuropathy is lessening but not gone. Otherwise feeling pretty good so that I feel bad about gaining weight back and need to work on that lol.
Hair is, not great; hoping that may improve after I'm off Herceptin and as my anemia levels are slowing rising. I finally made an appt with my stylist and am waking up every day debating whether to cancel it and try again in October. The growth that's there is up to a couple of inches in length but it's so sparse all over that I cover it up in front of everyone but my dog who doesn't seem to care. It's hard for me to tell if it's truly filling in, or just the longer pieces are covering up the many sparse areas on top and sides.
I go back to see the MO in early November, after some plastic surgery fix-ups and port removal in October. When I see him, I'll be asking what he thinks of the new Nerlynx drug for HER+. f I remember, I'll ask the nurses when I go in for Herceptin if they are seeing Nerlynx in use in their practice yet.
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Dropping in to say hi. I've missed you all, too!
My diagnosis date was July 20, and I actually forgot about it until a couple of days later. Not because of the fun I was having, but because my husband is in the hospital. Not fun. I'm starting to hate the month of July. And I'm worried about what stress will do to my body. My MO was incredibly supportive when I told him in a recent visit. I like him even better, now.
Did anyone have a PET scan after treatment was done? My insurance denied it as being unnecessary. Huh. I will be having a CT scan soon, though, to check on the lung nodule that was nothing and they want to make sure that it stays nothing.
I still have my port. Not sure how much longer, but since I have so many other things going on it's not as important anymore.
I have swelling in my fingers, so I had an evaluation for lymphodema. They determined that it wasn't that (and were happy about how proactive I was about getting there so quickly.) Next will be a stop to the rheumotologist to see if I have RA.
My hair is still purple, although it is due for a touch up. The hair in the middle front is still not growing very quickly, but otherwise I've been very happy with the way it has grown in. I may even keep it this short for awhile longer. It is just so easy to take care of.
Nice talking to you, ladies!
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Best wishes with your husband's recovery. Sounds like you have a good MO.
Mine seems technically competent but his idea of patient engagement is to stare at his computer screen for minutes on end while clicking on his keyboard & occasionally muttering to himself
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Thank you. Yes, I like my MO a lot. When I'm not disagreeing with him, of course.
He doesn't even have a computer in the room with him, just a nurse to take notes. (Which is way better than a computer.)0 -
They seem to have an intimidating number of online screens to click through at my hospital. But somehow the nurses in the chemo clinic manage to not let you notice, while with my MO that's almost all you notice except when he does the actual physical exam
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Hi misslil and NotTheBoss!!
Misslil congrats on that final chemo lady! I also am having weight loss issues...I feel like I am retaining water..lol...I feel bloated..I keep staying at my same weight even when I exercise and change my eating habits...I don't know if its the zoladex injection or the arimidex or the sweets I eat..haha...(sweets <----- its your fault)
NotTheBoss...I too hope your hubby has a speedy recovery..when it rains it pours don't it??....I didn't have a PET scan after treatment, that would have been nice if I could have one, I don't think my insurance will approve it just to give me "peace of mind".
My MO is nice also he doesn't have a computer or lap top in his possession during the office visit, the nurse always does...but I felt on my last visit with him he was kinda rushing me but, I didn't care I asked him my questions and got my answers...I feel like I am paying you for this visit and its not the other way around.
I saw the lympdema specialist also because I felt tightness on the area where I had radiation and under my surgery arm where they 10 lymph nodes were removed...I found out on that visit that I have radiation edema..go figure
....she gave me some exercises to do..to get the fluid flowing better..but I have been to exhausted to do the exercises everyday...I will stop being hard headed one day:)0 -
Nottheboss - I hope your husband recovers soon. Misslil, congrats on being done with chemo. Your hair will start growing faster once the treatment is over. Take biotin, it will help. My big toe debacle is coming to its ugly conclusion. The stunted growth got fixed, however, the nail is coming off...
It didn't grow for 7 month - turned all shades of yellow and purple, and now it's coming off. Well, at least the weather is getting cold, so I won't have to be upset about not wearing open toe shoes My first real follow up apt with MO got pushed back a couple of weeks - so it will be one year exactly from start of chemo. I have my notebook out writing down questions that I need to ask. I don't have weight issue - I lost about 12lb, and have regained 2 of those, and hoping to stay that way... Got diagnosed with Osteoarthritis of knees and hip joints - can't blame chemo or cancer - a 20yr old accident injury. So, I have one more reason to exercise - prevent further damage to joints and keep cancer at bay... good luck to all0 -
I read this article and I thought it was really on course....http://www.goodhousekeeping.com/health/a44380/thin...
A year ago, today, I was laying on a biopsy table looking at the doctors and the Ultra sound tech knowing something was wrong. I remember the doctors saying maybe it was "fibroids" and the tech just rubbing my arm saying maybe they found it early enough. Then my family and I packed up and went camping for 3 excruciating days. Excruciating because I was waiting for the telephone call I never really wanted to receive. I was officially diagnosed on 8/25/16. Tomorrow, 8/23/17, I will be at the hospital receiving my Herceptin treatment. I feel like every day is a mental and physical battle but I will never give up.
Even a year later, I still get angry that this has happened in my life. I have beat the "why me" to death. Ok, enough ranting and feeling sorry for myself! Time to move on!
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Sunday morning fun... we're trendsetters!
http://www.goodhousekeeping.com/beauty/hair/g2774/...
I got the Halle berry style but with bangs. I have bangs again! Fi
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Oh, how I wish there were "like" or love buttons on this site. It's been months since I've had a chance to get on here, so it's awesome to see the wonderful updates. Y'all are such an inspiration! I'm loving the hair pics!
Update:
Hair: Since my last chemo treatment in November, my hair is coming back fast and furious...and curly, which is something I've always wanted. I could get away with not wearing a wig through the summer, but now it's at that in-between stage. I don't have a cute round head. Mine is flat in the back. It looks fine from the front, but the side view is not so flattering. So the bob wig is back. I'm hoping to ditch it in a couple of months.
Chemo Brain: I feel as if my short-term memory and comprehension have gotten worse rather than better. This really concerns me. The words "I can't remember" and "I forgot" probably come out of my mouth 50 times a day. My vocabulary is terrible, and I can't remember simple words. A conversationalist I am not...anymore. This really affects my job and social life. I have to tell everyone to be patient with me...and they are...but how long will that last? Oh yeah. I have always been a great speller. Even that has changed. I would love to hear from others. Are y'all going through the same thing? Is this normal????
Neuropathy: Since I've had a history of plantar fasciitis or bone spurs, it's difficult to tell if it's neuropathy or not. My feet and hands do get cold and painful when others feel the temperature is fine. I'm ready to wear my heals, but not sure if that will ever happen again.
Meds: The doctor put me on Cymbalta back in February to help with the neuropathy. The side effects were bothering me, so he switched me to something else. (The name leaves me at the moment.) Weaning myself off Cymbalta a couple of months ago was not fun. Brain zaps and mood swings. I felt like hell. I'm just now beginning to feel normal again, but the last few days I've been having episodes during the day where I feel like I need to lie down immediately. My head just doesn't feel right. Is it dizziness or a headache? Hard to describe the feeling, but I have to lie down until it passes. Not sure if this is related to the drugs or not. This worries me. Anyone else going through this?
Again, y'all are such an inspiration. Keep the updates coming. Hope everyone has a great day!
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My MO wrote me a short prescription for Lyrica in relation to neuropathy, might that have been it? I understand what you're saying about being hard to judge if the neuropathy is gone or not. I also have had history with PF plus bunions on both feet, ugh. I've tried occasionally slight heels since the chemo, but not what I would normally be wearing to work. Still evaluating.
My hair remains a trainwreck, but ever so so slowly progressing. After a year, I went in yesterday for the first time to get what there is of it neatened up. Thankfully not many people in the shop and my stylist as always was very considerate. I'd like to think the growth will pick up now that I'm done with Herceptin and anemia has improved slightly. Not holding out much hope to ditch the wig in public before the holidays. Would love to be wrong on that.
After reading more about how Nerlynx is given, i decided not to ask my MO about it until my 3-month post-Herceptin visit in November. Otherwise, not much to complain about, and happy no evidence of disease from any recent exams/tests. Hope all here are well and progressing back into something resembling normalcy approaching a year out from chemo start
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Every time I think I'm adjusting well...
Almost exactly a year after feeling a lump, I felt another one in almost the same spot. Flipped out but talked myself off the ledge that it had to be remaining scar tissue. I had a MO appointment within a few weeks who then bumped my mammo up about 6 weeks. My BS usually orders them so let them know what was going on. If something was off they'd see me soon after otherwise keep the same appointment. Had a mammogram and ultrasound early July. Tech says it's fat necrosis and calcium...something. Not uncommon but will watch. It wasn't there in February at last visit but we'll check again in 6 months. Had my BS appointment this week and the PA recommended moving the next to 3 months instead of 6. And offered a biopsy if I was really worried. Actually, I wasn't that worried anymore but am starting to be with these suggestions! I saw my BS on the way out- she never came in the exam room- and she seemed worried that my answer to how are you was not quick and happy. I only had about 10 minutes to work through this new plan that puts this crap back in the forefront. Again. "Maybe you should speak to the counselor". Maybe I will one day. Just so ready to move on..
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CC, it sounds like it shouldn't be anything to worry over but I think you're smart to be so diligent that you found it and in having it checked out.
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CC--Sounds like you are right on top of things and are being proactive in following up. Can you believe it's been a year since all of us joined this board? Can't say the time has gone fast but here we are. I am in the middle of all of my one year follow up appointments. I was supposed to have a mammogram next week but because of an insurance issue it had to be rescheduled until the end of the month. I have not had one since July 2016 when I was diagnosed. I'm very nervous, especially since it has been over a year.
GonnaBePos--I hear you on the chemo brain. I'm starting to believe that it's a permanent condition for me. I am so forgetful lately. It's embarrassing. I had a survivorship appointment at the beginning of August. One of the people I met with told me that the effects of chemo are with us for 18 months after the last treatment. Even if our blood counts are back to normal our body is still feeling the effects. I'd guess chemo brain is one of them. I have been without a wig since the end of may. My hair is about 2.5 inches long and is getting curly which I am thrilled about. Everyone keeps telling me I should keep it short but I'm not convinced. I am now 5 months in of 10 years on hormone therapy. So far so good with no side effects from it.
Its great to hear from everyone again. We have sure been through a lot together.0 -
Good afternoon,
This is Emily with our oldest granddaughter from a trip we took to Vermont in June.
She finished her last Herceptin treatment last week and now only has to go back every 6 weeks for a port flush. She'll be keeping that in for at least two years. Given her aggressive form of cancer, her MO recommended it. He reiterated at her last appointment that if the cancer is going to come back, it'll most likely happen within that time frame.
During her MO visit, she mentioned to her doctor that she was having pain in her rib cage below the right breast and he was concerned enough about it to order a scan. She had that done the following week and it came back normal. Whew!
She also had both breasts mammo'd a couple of weeks ago and all the tests came back normal for that too.
Her hair has grown out nicely and people are always complimenting her on how nice it looks.
So, for now, she is back to normal. That seems weird to say after all she (and you all) went through over the past year.
We're headed to Colorado Springs the first 2 weeks of next month to visit our youngest daughter and son-in-law. We plan to do lots of exploring as neither of us have ever been there. Of course, seeing two more of our grandchildren is an awesome bonus!
Hugs to all!
Sam
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Glad Emily is doing well Sam! She looks good and such a pretty granddaughter!
Hahlyn
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Hi Sam! Thanks for the update. You have a beautiful grand daughter. Emily looks great and I am so happy for all of us that are now on the other side. Never thought I'd see the day that I could say that!! Enjoy your time in Colorado Springs. Wish I could meet up with you--I'm only 2 hours from there! It is beautiful and you will love it. Garden of the Gods is gorgeous, Cave of the Winds, very interesting and if your grandkids are young, take them to the North Pole. Pikes Peak, Cheyenne Mountain Zoo and the Air Force Academy are all right there too.
To me, this whole cancer ordeal is unbelievable. I just never dreamed that something could be so totally life consuming. It will continually be at the forefront of my mind. I am in the middle of my one year follow up appointments now. I'm thrilled to have hair again and I got an added bonus of curls.
It's wonderful to hear from you Sam!0 -
Sam, Emily looks great. I hope the MO is being way conservative keeping the port in, and it never needs to be used. Though the nurses seem to love it to draw blood lol.
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I'm not sure if anyone else has had this. "During her MO visit, she mentioned to her doctor that she was having pain in her rib cage"
I have noticed that on my left side the past week or so. It's lower on my side than where I'd had periodic sharp twinges near the implant that was placed in my 2008 surgery for DCIS; those were most likely nerve-related according to one of my drs.
This time it feels lower on my side. I've noticed it a few times when twisting, or picking up something on that side.
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I finished Herceptin yesterday! I will probably jinx myself but I do not have one doctors appointment in the whole month of October!
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Congrats Denny on finishing Herceptin!
Hi Sam/Emily! Glad you both are doing well and great pic!
GonnabePoz I have a little chemo brain also...Its like I forget certain words when I am talking to someone and the word be on the tip of my tongue but I cannot remember it for the life in me..then someone will say the word I be trying to say..it is very nerve racking.
Update:
I think the Zoladex injection is messing with my blood pressure...sometimes when I stand up real fast I get real dizzy and have to sit down for a sec to collect myself..I hate that feeling..it has happened a couple of times..I am going to bring it up next injection appointment.
Hope everyone is okay with the hurricanes and wild fires going on...mother nature has been on a war path lately:(
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Hit the one year mark from surgery at the beginning of the month. Found it way more emotional and stressful than I expected. (Not sure why I thought I would just sail right through.) Blood work isn't perfect, but all my levels are heading in the right direction and I have hair. Just need some energy. It's been frustrating as I seemed to be gaining strength, but then started to backslide. My BS says it is not unheard of and to rest when I need to, which seems like an awful lot lately. Chemo brain is active again too. Having a lot of trouble remembering words and sometimes names of people I've known for years.
Caught a cold right before Hurricane Irma. (Thanks, crappy immunity!) Had added stress due to our county administrator deciding that employees should man the public shelters instead of the Red Cross. My MO had already said no way I should be around large groups of people, but I had to get it officially in writing. I know a lot of people who got last minute mandatory assignments and no real training or support. It's disheartening as I generally enjoy my job (and need the insurance).
Hope everyone is doing well. Healing thoughts to all.
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Best wishes to all
I saw one of the surgeons last week. He agreed that the pain near the breast / rib area was nerve related. He said it could feel as if it goes out through the rib cage due to the way the nerves are situated but it starts at the surgery area. He did not see any need to have a scan to check it out. Otherwise a boring visit with no issues found, and getting ready to have my port taken out which will be a good milestone.
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Today was the moment of truth for me. I was diagnosed July 2016, surgery in August followed by 20 weeks of chemo and 6 weeks of radiation and now 6 months into 10 years of hormone therapy. Today I had my 6 month after radiation followup, extensive blood work and the dreaded first mammogram. I was sick with worry, fearing a repeat of this last year. But great news! I got a clean bill of health. Exam, blood work and mammogram were all normal!!! I'm a very happy girl tonight! A year ago I never dreamed this day would come. I am back in physical therapy for radiation induced fibrosis in my arm but that should be done by the end of the year. I am thrilled that my hair is growing back curly, just as I had hoped, although it's not growing nearly fast enough to suit me. Last year I missed my October birthday, Thanksgiving, Christmas and New Years because of feeling crummy from chemo. This year I'm celebrating them all! We have all been through so much together this past year. My wish is that everyone has come through the past months with flying colors. We all deserve a huge celebration for making it through this wild ride.
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It's nice to hear how everyone is doing. Yay for curly hair! I just got my hair cut again to go with the front that is still a slowpoke in the growing department.
I got my port taken out two weeks ago. My MO let me take it out earlier than he normally would since I thought I would have insurance issues. It's so exciting to get to this point. Have to schedule my 6 mo. mammo in October. Blech. My BS says that they give out free stuff in October. I said that I hate pink. She said, "If they're giving out the free crap, get the free crap." Ok, fine. I'll get some free crap.
My bad news is that my husband passed away at the end of August, after spending 2 months in the hospital. I swung back into the feeling of so stressed out that my brain couldn't function, which feels just like chemo brain. Things are better, and I'm coping pretty well, but I've had some tough times. Turns out I can keep my same insurance (if I pay), so I'm all set with that.
I'm ready for a year (or ten) of nothing bad happening. Who's with me?
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Nottheboss--I am so sorry to hear about your husband. Such sad news. I am glad that you are coping as well as you can. That has to be so hard. I am happy to hear that you are doing so well after the wild ride of cancer that we've all had. Please take good care of yourself.
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Seq24
Very sorry for the loss of your husband. May God continue to give you strength.
Hahlyn
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Nottheboss, my sympathies on the loss of your husband.
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nayda985<----raising my hand
I am with you Nottheboss:)
I am so sorry you lost your hubby.🌹🌹
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Thank you, all.
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NotTheBoss- my condolences
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