Who is starting chemo in September 2016?
Comments
-
Misslil
My doctor wants to start me on the same drug..please post any side effects..TCHP was awful with the big D. Be interested to see how you do.
Hahlyn
0 -
Hahlyn, there's a thread specifically on Nerlynx if you haven't run across it. It's called "Nerlynx Approved by FDA to Treat Early-Stage, HER2-Positive BC"
A few people there have shared their experiences during the clinical trial phase or since it gained FDA approval for the rest of us. I had some D in the first months of TCHP. Usually it hit me in the morning and then was ok to go about the rest of my day. It stopped being much of an issue after the 2nd/3rd month. One report I saw on Nerlynx suggested if you follow the protocol to load up on Imodium, it significantly reduces the D effect and limits its plaguing you past the first month or so. I'm hoping that proves true!
0 -
Missil, I'm starting it too! I've entered a clinical trial that is studying different anti-diarrheal combinations to take along with the Nerlynx. I take my first dose on January 8. I'm a little nervous about it, but I'm hoping to do my part in developing a protocol that will make the SE's more tolerable for everyone. My trial arm has me taking colestipol along with Immodium. Let's keep each other posted and cheer one another on!
0 -
Happy new year everyone! I had every intention of making 2018 spectacular but by the afternoon of the 2nd, I just have up! No major challenges but enough mini ones that the demons took over and put me back in my place. Ugg.
Still, I’m very grateful that I’m not in the same “place” I was a year ago...between chemo and rads, hairless, jobless, frustrated and tired. I’m still frustrated and tired but trying to remember that I am moving forward and I will make decisions that are right for me and my family.
Med-wise I had my ovaries and tubes removed a few weeks ago so am only on Anastrozole and a bunch of vitamins now. I do feel better without the evil z shot, not great but better. I’m 0/2 on biopsies. They couldn’t do the US guided (calcification doesn’t show on US) or mammo guided (the area is way back towards the shoulder so they couldn’t smoosh enough to make it work). Now I just wait and pray for the next mammogram scheduled in March that the spots have gone away or at least reduced. If it wasn’t for these spots I think I’d be in a much better head space. I’ve got a surgery follow up Monday and no more appointments until March-that’s a record for the last 20 months!
I hope everyone had a wonderful holiday season and is staying warm this weekend! Peace and comfort to a
0 -
Finished my first week on the Nerlynx. Very little diarrhea other than one morning. I wound up dialing back the Imodium as I was getting the opposite situation going on, and found myself popping some Colace and even a laxative pill this morning ...
Will see what week 2 brings, from something I read it seemed that the SEs might kick in early the second week.
I have been pretty tired and napping a lot, don't know if that's related or just the blahs as it's been so blasted cold here lately.
Hope all are well
0 -
Misslil, I know I said I was beginning Nerlynx on the 8th (tomorrow), but I had to postpone my starting it. I had my nipple reconstruction 2 weeks ago and didn't realize he would be doing fat harvesting which turned into a "mini" tummy tuck. I'll have to be in a compression garment for another 4 weeks, and do NOT want to deal with the SE's and maneuvering this darn thing every time I have to go to the bathroom. My start date is now the second week of February. I hope your SE's are minimal!
0 -
Best wishes with the recovery from surgery, docmama. I had a fat grafting procedure in late October. I didn't have to wear the compression wrap for all that long but it was uncomfortable recovering regardless. Around the liposuction area in particular.
0 -
Misslil & Docmama....I am definitely following your Nerlynx updates. Just curious...what made your doctors decide to try Nerylynx? When I asked my Oncologist she was not really pushing it. Docmama....how did you get into a clinical trial? I just want to make sure I am doing everything in my possible power to keep myself cancer free. Best of luck to you!
0 -
I read it about it here and in some more detailed articles, and asked my MO after I was done with Herceptin. He had vaguely heard of it but given how new it is, it had not been used yet in his practice. He read up on it, we discussed some pros and cons, and he put the Rx in through my insurance to get pre-approval which seemed to come without much problem.
Early days but so far while I've had some D issues it's been nothing out of control. Not that much different than what I recall from being on TCHP.
0 -
Dennyj, I work in Clinical Trials myself and when I first found out about Nerlynx, I looked at a site I regularly use at work, ClinicalTrials.gov, where most trials being conducted by major pharmaceutical companies are listed. I found the Puma trial listed with a location very close to where I live and after getting the green light from my MO (he actually was intrigued by the different antidiarrheal agents being used) I enrolled. The beauty of this trial for us is that there is no placebo arm - everyone gets Nerlynx. In fact, the investigational product for this trial is Immodium. I will be in the arm of the study that uses Cholestipol in conjunction with Immodium. Here is the link to the study's listing on ClinicalTrials.gov. Scroll down to Study Locations to see if there is a location near you.
https://clinicaltrials.gov/ct2/show/NCT02400476
0 -
Thank you Docmama....I really appreciate your response. I will definitely check out the site...I am near Providence and Boston so I there must be something around here. Thank you!
0 -
Hello All
Saw my oncologist yesterday, I finished herceptin Dec 29. Prior to my last treatment she spoke to me a little bit about nerlynx but didn't give much info. I was so excited because there is a pill for us Her2 gals. Yesterday she starts fully explaining the side effects which I knew about from reading the boards but she made it seem like I could possible be in a debilitated state like I was during TCHP😯 That regimen was hard on me the big D from September to January after every treatment ws I was weak and needed fluids. I did not recover until 2 weeks I had 1 week of where I felt half way decent.
My question is for those that had TCHP and a rough go of it and are now on nerlynx how are you doing? I want to take this medicine and do whatever I can but I am freightend at the thought of explosive diarrhea and possible nausea. She did say i would be loaded up with immodium but that didn't work for me..just scared but at that same time want to take a stab at it.
Hahlyn
0 -
Hi everyone! And Happy New Year!
I hope everyone is doing well....I am also thinking of getting my ovaries removed...and getting rid of the zoladex injection...between that injection and the Arimidex...they are reeking havoc on my urinary system...I am having to take vesicare for the urgency and elavil for the burning...I am like OMG!!!...I am going to talk to my Onc... and ask him what are my options far as eliminating the Zoladex injection.
Other than that I am doing great...rejoining civilization..lol....but this thread will always be home for me!
0 -
Hey Nayda
Glad to hear your doing well...sorry to hear about the side effects...i just started a new pill for my her2 positive...I have to take6 small pills along with 6 immodium everyday .. D is a major side effects for this pill...but im handling it best I can.
Take care...Hahlyn
0 -
hi Hahlyn!
I am glad you are doing well lady:)
Before I was diagnosed...I wasn't on any medicine....now look at us...lol...I am on like 6 different medicines now...I hope the immodium helps you...the only thing that helps me with the Big D...is my savior "Maalox...extra strength"....you hang in there lady!
0 -
Nayda - Do you have to do the zoladex every month? Its funny, I was saying how I used to take no medicine...and now I look like a granny!!! I hope that you are feeling well!
Hahlyn - How is the nerlynx going? Are you taking it with tamoxifen? I am interested in the drug but my doctor does not seem sold on it. Can you write an update as you can?
Happy New Year to everyone!
0 -
Hi Denny
I started the nerylnx Tuesday I take 6 small pills at one time along with 2 immodium. I continue to take 2 immodium again at noon then again at 6 for a total of 6 immodium a day. When I first started i didnt have a BM for 3 days then finally it hit...this drug the biggest side effect is the big D. So far its controlled by the immodium but even if I go to pee a little D comes out(apologize for TMI). For the past 2 days at around noon I get a little nauseaus and feel extremely tired. When I get home from work I take a nap and I feel better. My appetite has changed not eating as much and this is just on the meds for 4 days.
I dont like the D nor the nausea in the afternoon but im dealing with it...my oncologist said if it gets too rough they can adjust the meds.
I'm not on tamoxifen as my BC was er pr negative.
Hope this helps.
Hahlyn
0 -
Hey Denny!
Yes I am getting the "evil" Zoladex once a month...onc says for 5 years...I dont know if I can do this for 5 years...I know Imma end up getting my ovaries removed...lol...my insurance trying to act up...saying that April will be the last month they cover it if I don't get Prior Authorization for it..."boo!"
*Always somthing..ha*
Keep being great ladies!!:)
0 -
hey Nayda-
I had my ovaries and tubes removed in December. I hated that shot and seemed to always have a throb in my side. GYN onc was awesome, had the plan of simple laparoscopic removal but was leaving the possibility open to do anything further that might be needed. I am also chek2 unknown with genetics so he took a look around while in there and all was well!
Absolute best part- had follow up with him first week of January and praying will never have to see him again. So one less specialist on my list! And no more monthly visits. Had that goodbye visit and no specialist visits until next week for my mammogram. That’s almost 3 months! The longest I’ve been away from a doctor with Oncology in their title!
My two cents. A good decision- for me. You are not me but you’ll make the right decision for you.
0 -
Hey CC!
Question....how long did it take for you to recuperate after your ovary and tubes removal?
0 -
Nayda - in my case just a few days. Had the surgery on a Wednesday and was told to take the rest of the week off and basically not do anything stupid. I did go into work on Friday for a few hours to help out a bit. Sat at a computer the whole time and needed a nap when I got home! I think my biggest complaint was the cut in the belly button bugged me way longer than I thought it should. I had two little incisions over the ovaries that healed quickly but the main laparoscopic “hole” is the belly button and closed up with dissolving stitches. It started punching and poking as the swelling went down and was just annoying! My post op appointment was almost a month later and I was told they could snip the sutures then if needed-but by then it was fine.
Got a mammogram on Tuesday....prayers those calcium spots have gone away, PLEASE !!!! If not I might be headed for a full on surgical biopsy which doesn’t sound like anything I want to do. 😞 But the last few months of not talking cancer with oncs has been awesome! Couldn’t make it doctor free though... had to go into my pcp for a uti this week. Hoping and praying that after this round of checks I can take a few months off again
0 -
Thanks CC for the info lady!
I am going to talk to my onc and gyno docs and get that done also...bc i can't see myself continuing getting the evil Z shot.
I am praying that those calcium spots have left the building!
0 -
Hi All,
I'm so happy to see everybody posting and doing well. I started using estrogen cream and feel a little like myself again. Switched from Arimidex to Tamoxifen and my joint pain has greatly reduced even though I'm told that shouldn't be happening. Had my first fat graft done a few weeks ago. That was pretty awful but worth it. In addition to the fat injections, my surgeon "released" the scar tissue that radiation caused which made my breast turn in on itself and inverted my nipple. Now my aureola and nipple are back in the middle of my breast. I am told I may need a couple more grafts to fill in the dents. Even if we stop now, I'm so much happier with my Frankenstein boob than the rotten peach that was there before.
I developed hypertension during chemo and they initially assumed it was white coat syndrome and didn't treat it. A year later after still having high blood pressure readings, they started putting me on lisinopril. They claim my treatment has nothing to do with my hypertension but I suspect otherwise. Always an adventure.
0 -
Bagsharon Hi!
I wanted to comment on the blood pressure issue you brought up...I have been going through the same thing...ever since I became diagnosed with cancer, my blood pressure readings keep being so high....the cancer center is saying the same thing to me about white coat syndrome...I keep telling them that is not it...my blood pressure was high on my last Z injection visit and the nurse had to call my onc and make sure I could still get the injection..he said it was fine..but still you know....I went to my pcp and she says I don't need to be on blood pressure meds...it is so aggravating...I know when I go back for my shot this month and blood pressure is high..I am going to demand that they do something..b/c I know my blood pressure is running high b/c of the chemo I had and because of the zoladex now
you are right always an adventure:).
0 -
Hi to those posting and lurking here. So far, I'm doing reasonably well as I'm closing in on 18 mos after last TCHP treatment. No notable developments on any of the most worrisome things - thankfully.
No major SEs after the surgeries or radiation, plastic surgery results were decent. Not sure I will do the second "fill" that my PS recommends. Still have some months to decide that, I decided to wait and try and see how things look after losing some weight first.
My hair is a trainwreck, still covering it up. I'd like to think that will someday change but if ever, it's going to be a long haul.
I'm in month 4 of 12 on the HER2+ Nerlynx medication -- overall not bad but fatigue and intermittent D issues. Can I give that credit for the 5-10 lbs I've lost since re-gaining some weight after chemo? Will have my 2-year mammogram since last Dx in the summer. Hoping it proves boringly boring. Best wishes to all
0 -
Alright ladies...time for an update! I'd love to hear how everyone is doing now...just to know if I'm still normal...:)
It's now been 2 years since my LX and feel like I shouldn't be seeing doctors nearly as much as I am and getting very bummed. Saw my MO this morning again (several times already this year for only being on Anastrozole) hoping and praying that it would be the last for the year...but no. Another scan in 12 weeks and followup after. Again. Got several things they want to keep an eye on and have even more referrals to other doctors because something's up and they don't know what, other than it's probably not cancer. ....thanks for the almost reassurance, btw, I was told it's probably not cancer just over two years ago, too.
So how's everyone doing? Have you been able to forget enough of this journey yet? Until I bring it back up in all it's glory? sorry
0 -
CC2016, nice to see someone check in. I was thinking to write a note myself, after my upcoming mammogram but now's as good as anytime I guess.
I'm doing pretty well, no significant issues since I finished Herceptin. I've been on the new Nerlynx drug for HER2+ and getting through it, though the fatigue is getting tiresome after 6 months. The plan is only for a year on that drug, so I've passed halfway.
Hoping for good luck on the mammogram. Hi to anyone else out there lurking or who can stop by to post.
0 -
My daughter and I just got back from a cruise a couple of days ago. Two years ago in July I was diagnosed with cancer, and last July my husband was admitted to the hospital where he stayed for two months before passing away. This July I determined that there would be NO doctors and planned something fun to start some good memories. (We went thru a mild hurricane, so there was some throwing up involved, but it was MOSTLY fun.)
Otherwise, things are pretty good. I just bought my first new regular bras (I had a lumpectomy so just use an extra pad on one side.) It was nice to have something pretty again. I mentioned having constipation to my oncology doctor, which I think is from the calcium pills, but he wanted a colonoscopy. Fun times, but since I am 55 and have never had one, I guess I've gotten off easy. It went fine (I have more anxiety with any test results now since cancer, though).
I have mild side effects, but all-in-all I've been doing really well.
0 -
I've never had a colonoscopy either, a couple of years older. I keep forgetting and it's more complicated to schedule than other things here (big packet of forms, anesthesia I guess meaning I may not be able to drive myself there and back?).
One thing I forgot to mention, unfortunately my hair is still a trainwreck from TCHP. It's grown in some, but way too thin to be seen in public so I'm still wearing a wig at work and caps/scarves otherwise. I don't feel like Gollum anymore, but I still kind of look like it.
0 -
Yeah, I'm tired of doctors too. Had my annual gynecological visit this morning and he said, "what you been doing other than visiting us doctors?" It's partially my fault because I didn't have to get plastic surgery but dammit if anything good is going to come out of having cancer, it's going to be liposuction of my abundant belly and new perky breasts. I wish the picture forum wasn't so wonky, I'd post all kinds of pictures of these beauts.
I had a colonoscopy at 50 and was cleared for 10 years but now that my dad has been diagnosed with stage 4 colon rectal cancer, I have to go back sooner.
I have not had any issues with my hair. I found the maintenance of being hairless refreshing and have kept it super short ever since. I just go in and tell them to run a number 3 on the electric razor on the sides. (The picture on my profile is pre cancer treatment, by the way.)
0
