TRIPLE POSITIVE GROUP

deni1661

Laughinggull- what a horrible and scary experience you went through. I hope you feel better soon. Definitely stand your ground and insist on the shot. Take care

rljes

Hi Everyone -
Gods WithMe - where would I find this movie "Living Proof" since it was made back in 2008? 

SpecialK

You can order it on Amazon.

Blownaway

HapB - I take lisinopril and carvedilol. I stopped taking Tamoxifen at the end of November and have completely weaned myself off gabapentin and duloxitine since then. I only took those to combat the tamoxifen si/e's.

rljes

Hi LaughinhGul - I too have had the Neulasta injections (pod) with each chemo treatment. Like I've said many times, it just amazes me the different treatments across the world. 

Thanks Special K.  ( I knew Amazon Prime would come in handy this year) 

SpecialK

rljes - if you have Netflix you can also get it there, I am old school and still get DVDs so I am not sure if you can stream it directly from Netflix. You can order it from Amazon and I think it is $12.99, but with Prime you may be able to stream it that way too if they have it available for that method.

coachvicky

I bought my DVD of Living Proof from Amazon.com.

Vicky

Suburbs

Cherry-sw and LaughingGull, very sorry to hear you are dealing with some rotten side effects and bumps in the road from chemo. Trips to the ER and hospital stays are rotten. There is no way to sugar coat the triple positive treatment plan. It's a brutal road. I get tired of saying it will get better and wish I could wave my magic wand and make things better.

I feel guilty when I think about my own complaints. When will this end and does it ever end? I finished my last Herceptin last week and had to ring the bell. I've been going to Herceptin infusions alone ever since I could drive myself. My blood pressure was so low that they ordered blood work. It wasn't bad, just low red blood cells etc but not low enough to do anything about it. I felt rotten. I rang the bell and broke down and cried and could not run out of the infusion room fast enough. Sometimes it's just impossible to be positive. Thanks for listening.

shelabela

suburbs, i have had to go alone to Herceptin also. Sucks. Just having someone there makes a person feel better. Hugs. Yay on finishing🤗 i have my last one Feb 6. The same day I had my first 1 a year ago. Going to be a hard day.

Has anyone on here had lipo and fat grafting done? I had this done Friday and the lipo area sure does hurt. Wow. Where they did the grafting doesn't hurt much. My PS plans to do 1 more session before they do the exchange

coachvicky

Suburbs ...

It will get better.

Having that last infusion is tough. I cried too. And I am u nsure if they were tears of joy or piss-i-tive-ity! One one hand, that part is over. On the other hand, the question is "what is ahead?"

Hang in there. It is OK not to be positive all the time. Give yourself permission to grieve and feel.

Love, Vicky

Homemadesalsa

You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.

Keep fighting, ladies, you're inspirational.

Homemadesalsa

You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.

Keep fighting, ladies, you're inspirational.

Homemadesalsa

You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.

Keep fighting, ladies, you're inspirational.

Homemadesalsa

You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.

Keep fighting, ladies, you're inspirational.

SpecialK

suburbs - congrats on your last H, I went alone to all of mine also. DH came to the 6 TCH infusions, but not the H only ones. I was OK with it, just used the 90 mins to read, but I know it can be a lonely feeling. Moving on from here can still be a minefield but I hope you're feeling physically better asap!

homemadesalsa - sorry about your N/V on the AC - totally known for that side effect, there is also a transdermal skin patch called Sancuso that is an anti-emetic and it has a longer active effect than anything IV or by pill. Zofran can cause a wicked headache. You can also return to your center for extra fluids next day with extra IV dexamethasone, that is pretty standard for the dose dense AC infusions. Since you know you have this reaction you may want to request that as standard practice for you. The good news is that if you are receiving Taxol next after the AC is done it has less of a N/V effect.

Homemadesalsa

You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.


Keep fighting, ladies, you're inspirational.

kae_md99

Suburbs,

congrats on your last H. i will have mine next week. i am already imagining myself running out of there as soon as they remove the needle from my port and i dont wanna go there anymore.. but, i will still be reminded everytime i see my MO bec herclinic is next door....

Homemadesalsa

Sorry for multiple posts/ deletions. I have learning that posting from the phone doesn't work as well as the computer.

HapB- strength and grace with your scans. To me at least, knowing is SO much better than wondering.

ODT Zofran for sure, and I will ask about the Sancuso.

Cherry-sw

HapB, good luck with your scans tomorrow, sending positive thoughts your way, it is going to be fine, you will see, hugs

Cherry-sw

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

Cherry-sw

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

bjquilter

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.

coachvicky

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

PeachyJeanne

HapB we'll all be with you tomorrow. Might get a tad crowded in that scan.

Blownaway

Hugs to you HapB!!! Will pray for you

Blownaway

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

BJI

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!

SpecialK

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.

Anonymous

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.

moodyblues

Hapb  Prayers for great scan results AND peace for you.