TRIPLE POSITIVE GROUP
Comments
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LaughtingGull, you ended up in ER with neutropenic fever, but you know it already. What I do not understand is why the nurses and doctors wave it away all the time. We were a group of approx 30 who started chemo in August, two ended up in ER with neutropenic fever that for both developed within hours, but when I have mentioned it both to my nurse and the doctor, they said it was not common, and I said, yes, it was, and told them about our group. Only then, reluctantly, they start telling about how your own germs can kill you. You have no idea how many times I had to refer (actually I want to say rub but do not want to sound ... impalate) to the information I received here on these boards to my clinic personnel, once even citing SpecialK to ny oncologist, whose answer was, well, that she took her time to compose such an accurate comparison... I was still given an instruction to monitor my body temperature and in case of going above 38C I had to call the clinic and go to ER. Why wouldn’t they call it for what it was? Similar was with my piccline. No one in six month, not even when they removed it, has mentioned to me that it could impede the blood circulation when removed. When they suspected a thromb they told me it was either or
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Suburbs, hugs and congratulations on your last Herceptin! But I fully understand the tears. Back that horrendous last fall the nurse at the clinic told me she understood I was depressed, people could be depressed just seeing Radiumhemmet, this is what the oncology center at my clinic called. I remember I was offended, it was so clear that even though she worked there she thought she was never going to get it and on behalf of all other people who felt sick just looking at that sign above that building she acknoledged that people like me had a right to be depressed. And I thought that I used to be a people like her before I found out I had cancer, and therefore on behalf of people like me I wanted to pass to people like her that when it happens, no matter how you hate that you have to do it, you gulp and you go to these treatments where I felt like I was violated for letting them to do all these stuff to me. Yesterday I had my first Herceptin since EC, the first one without chemo. I came with my husband and it took ten minutes, here it is given as an injection. I was sitting and crying on that bed because I hated being there, I did not for any of these and while any other bc are over with the treatments and surgery in four-six months, I will have rads, Herceptin and my cancer rehab. If I ever hear again that someone cannot stand a sign of Radiumhemmet I will tell them, do not look away, you never know(
I was supposed to tell you how I understand your emotions and at the end talked about myself, sorry I could not do it in any better way but I know I will be crying every time I am in that infusion room. Hugs again, Cherry
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Hi All,
I'll be having my first treatment of herceptin alone. Is the dose higher than what you get with taxol treatments? Do they give any pre meds with the first dose if the dosage is increased? I'm just wondering if I'll need anyone to drive me home. I was always so tired after taxol because of pre meds. Thanks.
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Bj...
I got Tylenol and Benadryl as well as a nausea med.
I recommend that you ask for your Herceptin to go SLOW. Don't let them rush it thru your body.
Vicky
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HapB we'll all be with you tomorrow. Might get a tad crowded in that scan.
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Hugs to you HapB!!! Will pray for you
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Homemadesal - I too suffered with severe nausea for 3-4 days after TCH infusions. Someone on this site (maybe Special K) told me to ask that several drugs be added to my chemo cocktail. Hopefully she will chime in on this because I don't remember all the names? At my 2nd infusion, I took the list of (seems like 5 different drugs) and I was told that I had been given all but one...Emend. I requested that it be added and was never sick with nausea again. Hope this helps because the day after drugs gave me terrible headaches
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Bjquilter - I got triple the weekly dose of Herceptin every three weeks with no premeds. I drove myself there and back with no issues. Also my infusion was over 30 minutes and had no SE. Looking ahead, after next Tuesday I have 5 more Herceptin to go!
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hap - in your pocket for the scan, crossing my fingers for a clear report.
homemade - in addition to Zofran and the Sancuso patch, other anti-emetics commonly used are Kytril, Aloxi and Emend. I had Aloxi and Dexamethasone in my pre-meds, and had take home meds of Zofran (useless for me and gave me a headache and still vomited), second line was Compazine which worked like a champ, then third line was Ativan, which I never had to use.
bjquilter - if you have been getting Herceptin with weekly Taxol and then move to a 3 week regimen of Herceptin only it will be a larger dose. I did not have any pre-meds with Herceptin only and drove myself to all of those infusions. I had TCH so I had dosing every 21 days from the start with 90 minute infusions until the first H only, then they did it over 30 minutes. I ended up with very bad bone/joint pain. Asked to have it over 90 minutes for the remaining infusions - no problems. I would recommend that you ask for a 90 minute infusion of this first larger dose at a minimum, and based on anecdotal experience - my own, and many others - I personally feel H only should always be run at 90 minutes, but I know many have had 30 or 60 minute infusions with no issues. I found that going for my H only infusions late in the day allowed for open chairs in the infusion center as many who had chemo had already finished - this way the nurses had no issue with running it slow for me.
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Hi all,
Getting back into the swing of things so thought I would check back in. For all the Christmas decor lovers, count me with you! I have reduced my tree count, but I have the main one, one of the white twig trees in my living room that I hang my Swarovski snowflake crystal ornaments on, and one in the playroom/office upstairs that I got back out this year after not using it for awhile. I still have all my daughter's beanie babies. They make the cutest and easiest to decorate tree. You just stuff them all in. Oh...and I did not put one up in my 29 year old daughter's room this year. She got home from LA and wanted to know where her tree was. Told her it was in the basement and she was welcome to go get it. Off she went and happily set it up six days before Christmas lol.
My husband's father passed away on New Year's Day. He had had dementia and been bedchair ridden for several years, so while it was a surprise, because it happened so fast, it was also a blessing. It is no way to live. But that required changing flights for daughter's trip home, etc. I feel like I am just now getting back into the swing of things.
Since my panic of last month and the tests, I thought it I needed to see the new oncologist that my previous retiring oncologist recommended. She is great. I think we will work well together. However, for some reason, she likes to see her patients that are on an AI every three months. Sheesh. I am not good at moving to start with, lol, it will never happen that way. Who am I kidding, it wouldn't happen anyway lol. Since I am back on Arimidex, she wants me to get a dexascan update. I thought I was done with Prolia because last time they said I don't need it anymore, my scan was great. She says since I am back on AI, she feels differently. Of course.
Then...I emailed my breast specialist. I was due to have an mri for an area of foci that they saw last year to make sure there was not change. I asked if the CT scan that was done in December could replace the MRI. Of course not. Oncologist agreed. So...I had that last week. All is good and the area of foci resolved itself.
Both docs looked closely at the lump and the scan results. MRI picked up a little bit of it. They believe it is fatty tissue, but said it was good I learned about the enlarged thyroid as that can be watched in case of any changes. So...I am probably glowing from all the dye in the last two months.
Cherry...feel free to ask me any questions. I am going to make a point to be back on more often now. I miss it when I stay away. I decided on bilateral because I got a pass on radiation if I did that, plus, the lumpectomy would have caused a fair amount of recon to be done. I grew big breasts after my second child. I had been a B and grew to a D. Never did adjust, so I am back to much smaller and like it better. BUT...in hindsight, if I realized just how much difference it would make in arousal when fooling around, I might have just done one, so that I could keep sensation in the other. Maybe.
Homemade...my nails are still not right. While on herceptin, they were so thin, like baby nails. I couldn't do anything, they were so tender. Now they are really brittle yet. I suppose the AI could have something to do with that also.
Hapb...I am hoping your scans go well. I hear you about scan anxiety. I never sleep the night before one. I don't know where your other cancers are, but I hope you are beating them successfully.
Whomever talked about going to treatments alone...with the exception of the first one, I always went to mine alone. I actually liked it. I liked it when I could get a private room also. I didnt like sitting out in the family room. I had Aloxi and dexamethasone before treatments and was sent home with zofran, just like Special K. I really didn't have too much trouble with nausea. Pretty minor. I went in with a drink, a snack, my ipad (although all the chairs and rooms had tv's) and ut my hands and feet in lunch bags filled with ice in zip lock bags. It was a conversation starter with the nurses, lol.
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Hapb Prayers for great scan results AND peace for you.
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Thank you for your responses. I asked a friend to with me for my first H infusion since my hubby just had surgery and get go. Didn't know what to expect. I'll ask them to go slower on the first one.
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thinking of you today HapB! Sending hugs
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thinking of you today HapB! Sending hugs
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thinking of you today HapB! Sending hugs
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God bless hapB! i noticed that the second to the last herceptin made me fatigued.i will have my last Hthurs next week.. i am so done.KB870, glad to know you are starting to get better..
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Hi everyone, i've never posted in this thread before as i'm hormone negative, but as it's the most active on the her2+ board, i hope that's ok.
Basically i started on subcutaneous herceptin three weeks ago after completing 12 with taxol, and had my second herceptin alone today. After the first one, i got worse aches and pains then i had on TH, in my upper back all over, and beside the lower part of my right shoulder between the shoulder and spine in particular has been aching, and i still have some upper stomach issues and rib pains i had during TH, although they feel a bit better. I was wondering has anyone else had anything like that? I did ask the nurse today and she basically looked at me like id ten heads, and that no one has ever reported symptoms like that to her, only chest pain etc. Im really worried now
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Elfmcg, I also get subcutaneous Herceptin, I am in Europe. Just had my first injection after chemo this Monday. I have also been having issues with my upper back since the disgnosis in June, it started at some point in July. It probably has nothing to do with Herceptin, it could be all tension you got there during the treatment causing your muscle knots and lockingyour thorasic spine. Ask your rehab to sign you up for a PT appointment. I know this pain can be excruciating and even linger through the night
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I am called for a mammo tomorrow, I wanted my MO to order one before rads, but I am so nervous, last time they did it they found my bc, the question is what will happen tomorrow. And I started to take Tamoxifen today, red about all SEs and now wait all of them to happen to me😡 I mean I already am depressed, retain water, am cranky, gained a whole lot of weight, hot flashes, no sex drive, chemopause so just through some anti-hormonals on top of that, seems like a good idea
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bjquilter - Having herceptin every three weeks after having it weekly with the taxol means you will be getting more each time. Most centers put it in a 90 or 60 minute drip to try it. I had no trouble at 30 minutes but some do. I had no premeds - just a blood draw. Good luck.
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elf-my herceptin was IV but I felt worse after the first infusion than on chemo with a mix of herceptin. Oncologist slowed it to 90 minutes and it helped a lot.
Cherry-I was on tamoxifen for almost three years. The main thing for me was the hot flashes. They were awful...like drenching, about four times an hour. I had them in the day, not so bad at night. They switched me to arimidex at the three year mark when my vaginal ultrasound (ob/gyn did one every six months to monitor things due to potential for uterine cancer) showed a thickening of the lining, and my pap smear had endometrial cells in it. While not cancerous, apparently they shouldn't be there at my age. So on to arimidex. Hot flashes are much more manageable but joint pain was bad, can't sleep well, etc.
I hit the five year mark in 2016. Quit taking it in November of 16, when my oncologist said it would only make a 2% difference. Then I had that big scare last month. I immediately got out my stash that I had continued to fill and started back up. My new oncologist (last one retired) said I should do 7 years on an AI. So...I'm back at it. I can't get anyone to order the breast cancer index test. My new onc said she would order it but did not think it was covered. I have Anthem insurance and am going on a mission to find out if it would be covered. If so, I'm hoping that will give me some additional help in deciding if I continue.
On tamoxifen, my sex drive was pretty ok. On Arimidex, it is nil. I really have to work at it.
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i am curious , for those who hadlymph nodes taken out on both sides,where do you get your blood draws after your port is taken out? the lab i go to dont do legs/feet just like the hospitals nor do they do ports...
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Thinking of you Hapb and hope you get through these scans free and clear. You know I was the same with my recent MRI and you were a solid voice beside me. We all understand the feeling and I feel inside you will be ok
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hap - very good! Hang in there!
fluff - BCI is from Biotheranostics Laboratories. They have a department there that does nothing but insurance initial billing, then appeals if insurance denies coverage and payment. They handle the appeal process fully and if exhausted they do not charge the patient. This is what happened with me - because I am insured, but claim denied and appeals exhausted, I was not personally billed. If you are uninsured, they will use their patient assistance fund to reduce the cost.
kae - I had bi-lateral nodes removed and I allow infrequent blood draws/office visit BP on the side with fewer removed nodes, but I have good veins and I am an easy stick. For surgery they do BP on my ankle but I also allow an IV set on the side with fewer nodes, but I warn them they have to get it on the first try so bring the best they have for that one attempt, lol! This has worked for me so far for the 7 years since BMX with the subsequent 16 surgeries, but the vast majority of my labs after diagnosis were done at the oncologist's office so they used my port which was removed only a year ago.
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thanks SpecialK!
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HapB, great news!
Fluffqueen, my hot flashes are actually worse at night but they were induced by chemo. Now when I am 3,5 weeks past my last EC I have noticed they got less for every night, but I have started Tamoxifen so I expect them to be back. I just hope for as less SEs as possible, some people are so lucky they do not get any at all.
I just hot home from my mammo and US my MO ordered and everything looked fine, what a relief. I had a smaller lump nere my tumor location site that turned out to be just fat and the doctors confirmed that they could not see anything suspicious there. I was trying to act normal but burst into tears because I look gross and I was nervous because the last time I was in that room they told me that I had bc. So now I guess I can go on with rads without wondering.
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jumpship - basal cell skin cancers are the result of sun exposure, and tend to occur more frequently as you age due to cumulative sun exposure. I have had close to 40 of them, long pre-dating breast cancer - by 20 years. I do not believe there is any direct link between BCC and breast cancer, but it i thought that melanoma is more closely related to breast cancer but it is not completely understood how.
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HapB - sending you hugs - hope you find out something soon with your scan today
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Hapb - so glad you received good news on your scans! Prayers do work and may your faith continue to get you through as you fight on.
Suburbs congrats on your last infusion. it is a good feeling to be done!
Kae - congrats on your upcoming last infusion. It's a wonderful milestone to get these treatments in the rear view mirror and move forward with life. I pray your SEs from AI are minimal.
Cherry- happy to hear your MRI was clear, what a relief!
I'm housebound these days due to a major shoulder repair surgery last week. Recovery is going much slower than I would like but understandable considering everything my body has gone through in the last 18 months. Typing is a struggle but please know that even if I don't post often I'm with all of you in spirit and you're in my daily prayers. You all mean so much to me! Have a good weekend 😊0 -
deni - feel better soon! We're with YOU in spirit!
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