HERCEPTIN and/or PERJETA Threads
Comments
-
My PET scan results are good! Showing further reduction in tumors, did not see anything new going on in my shoulder and arm, so the doctor again assumes it must be lymphedema. I had finished 3 months of arm PT in December to regain strength and range of motion of my right arm and the therapist, who also treats lymphedema, said my arm was about as good as it would get.
0 -
Hi mlc96
This is wonderful news. You must feel very relieved!
L
0 -
Mic96 - Good News. I am doing the happy dance with you! As long as the arm swelling is not cancer, it can be managed.
0 -
Hi all! I am happy for the good news. I am starting Herceptin, Perjeta and Taxotere again. I have lung nodules and many internal nodes that are progressing. I switched over to UCSD. I think my oncologist doesn't read her files. She "forgot" the three nodes that appeared on my Aorta and that I am triple positive. Time to go!
Mara, i always follow you. Your attitude has been so helpful to me. Thanks to you all!
0 -
hi teakie88
I am on the same protocol as you since April 2015 Herceptin and Perjeta every 3 weeks and Zometa every 6 weeks. I am going into my 4th year on treatment this April. I had ovaries removed Nov 2015. I also take arimidex daily. My latest scans November 17 (ct and bone) showed continued stability. I experience a lot of aches and joint stiffness and muscle cramping but you know what! I don’t care, because I am happy to be here. I live my life in the moment and rarely think of my diagnosis. I won golfer of the year 2017 at my club and head up a group for people living with metastatic cancer. I know that I am very lucky with my mindset and put that down to my fathers side of the family who always saw the funny side in every adversity. I don’t want to undermine others who are struggling but everyone is different.
My only advice to others on this thread who are not coping well is to really live and laugh each day and to stay in the moment. Listen to uplifting music and sing out loud. Get a boxset of a good series and get stuck in.
Meditate each day and think of a person who you love, focus on them and all the love you have for them. Think of the nice things that have happened to you in your life and how they make you feel. However, before you start meditating imagine that you have a big box beside you and every time you find yourself wondering or thinking negative thoughts you must consciously put that thought in the box and say NO I am not thinking about that. I find that this helps.Take care.
0 -
Hi FM508
Just read your story and want to thank you for posting. I am one year out now since a met in mediastinum LN. Previously had gone 6.5 years with no signs of trouble and so stage 4 was a shock- as it is for us all.
I like your mindset!
Liz
0 -
hey jackboo09
Delighted to see in the threads that you are doing well. I remember your name from when you first came on the site.
I dip in and dip out of this site every now and then to see if any new stuff is being talked about!!
Anyway mind yourself xx
0 -
Hi, It's been awhile since I posted. I'm just looking for some opinions. I recently had progression in the iliac crest. It's my first progression since diagnosis. It's very small, in fact the CT did not pick it up but the bone scan did. All other mets are not active. This was a new spot. My MO took me off of tamoxifen and Perjeta and put me on Letrozole along with Herceptin, Zometa and Zoladex. She mentioned getting the spot radiated and said I could go for a consult. I'm just wondering what you think. I'm not in any pain so I'm not sure. She said I have a window of a month....just wondering about your thoughts....I'm triple positive. Also I see everyone is on Ibrance/Letrozole and I'm kind of wondering about the Letrozole alone....Thanks so much for your opinions. Hope all are doing well.
0 -
txmom, the one month window sounds odd, why can’t you get rads whenever you want? I don’t have advice but my MO wants to use my bone met as a thermometer, not sure if that sits well with you but I suppose it would show how treatment is working or not.
0 -
She just said there's really no point after a month, that I might as well wait until scans to see if the letrozole is working. I think the thought is that I only have one tiny active spot so might as well zap it and get back to no active disease rather than take the chance it could spread. I'm just wondering if the letrozole could make it inactive without the radiation. I've been on the letrozole for 2 weeksand the bone ache is already gone.
0 -
Hi FM508
Wonderful to hear from you too! We both had a long run after primary dx: 6 years for me.
It is so great to see that you are in your 4th year since stage 4 dx. I hope I can achieve long term NEAD as well.
Txmom, hi to you. Seek another opinion or ask further questions. I would throw everything at it though. Just my view though. Let us know how you get on.
I hope lots more will jump in and say how they are doing.
L
0 -
Hi Txmom - I think waiting to see if the letrozole works on that met would be just fine. You can always have it zapped after a month or two. Also, it is my understanding (and I could be wrong), that Ibrance is not approved for Her2 positive folks. There is currently a clinical trial (PATINA)
that is studying if the addition of Ibrance will help progression free survival. I am going to speak with my MO about this study at my next visit. One thing I worry about is the amount of drugs that I would be on. If I add Ibrance, I will be on Herceptin, Perjeta, Zometa, Lupron, Letrozole and then Ibrance. That seems like a lot to me.
Let us know what you decide
0 -
Txmom, I agree with Liz (jackboo), I would definitely ask questions about WHY there is a need to change your first line treatment so quickly. See what the concern is and if it is a tiny spot, ask why they did not leave you on the same treatment as before for a month. If the answer does not satisfy, I agree about seeking a second opinion. You could also ask if they would use Perjeta in your treatment again or if you are losing it as part of the treatment regimen.
Sometimes there may be reasons we don't know about that the MO does, but they may not provide enough explanation of the different options.
0 -
I agree that a second opinion is never a bad idea.
0 -
For those of you that have been on H&P long-term, are you still doing every 3 weeks, or have you gone to monthly? I'm currently NEAD and approaching one year since diagnosis (next month), and my MO is recommending H&P every 4 weeks instead of 3 once I pass the one year mark. He has other patients doing that, but just wanted to see how common it is.
Liz- regarding the hysterectomy/oopherectomy, I'm brca1+, putting me at higher risk for ovarian cancer, so this surgery has been on my “to do before age 35" list since I learned of my genetic mutation a few years ago. ;-P
0 -
Hi Everyone, she took me off the tamoxifen because my blood work indicates that I am no longer premenopausal but am postmenopausal. I just happen to look at my MDA info today and noticed that I have a radiology consult set for tomorrow about radiating the spot. I'm not sure how I feel about it. I have no pain so, I don't really know what to do. Meanwhile, I hadn't planned on taking tomorrow off....
0 -
I have been NED from the neck down since 2015 but have not been offered a 4 week treatment cycle. Still every 3 weeks. I think 4 weeks sounds nice.
0 -
I just passed the 1 year mark but am still on H & P every 3 weeks, I am not NEAD though. One stable bone met and one tiny remaining brain lesion. I feel good, we'll see what changes down the road
0 -
Hi Erin
Good to hear from you. I am also one year out from stage 4 dx now and NEAD.
Haven’t heard about the 4 weekly tx. In theory it sounds wonderful. Will ask next time I see my onco in March.
L
0 -
I've found one study that looked at Herceptin every 3 weeks vs. every 4 weeks
Conclusion: “In our study, we found that fixed-dose monthly trastuzumab was feasible and effective. In addition, the CV risk was not higher with the fixed-dose protocol. This treatment modality could lower the cost and was easier to implement in clinical practice. Larger prospective randomized studies with longer-term follow up are needed to confirm our results.“
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783010/
0 -
I’ve been on the 3 week protocol for over 3 years. Never offered 4 weeks, maybe because I have 6-7 places that still show up on the CTs. Don’t know if they are sleeping her2 or just run of the mill nodules that might have been there anyway. They are small..between 3-7 mm.
Interestingly, I’m now trying 1/3 dose of Herceptin weekly to see if the side effects (which medical likes to deny) decrease. And I had an infusion reaction recently at over 50 doses so I’m now getting IV steroids. I want to talk my Doc out of that....see what happens. I realize that might not be best idea, but IV steroids forever is not good either. Any ideas
0 -
I have not heard of every 4 week Herceptin....but I'm fairly new to mbc...I would think that the reason for 3 weeks is due to the half life of the drug....hence the reason for the loading dose. The study that Mommyerin found is interesting...but that says larger study is required before protocol change....so I guess I would be wary of the change....especially after only a year.
Beatmon...I have no ideas...sorry. But am wondering what SEs your experiencing.
0 -
Hi
I thought the 21 day cycle was connected to cell regeneration time?
How are people finding life on HP?
What can I expect from a port fitting procedure. I am very prone to anxiety about things like this but want to get one for the greater good so to speak.
Liz
0 -
Life on HP is very good. Still able to get my hour long walks. Sometimes fatigued but not until later in the day. No SE other than a bellyache the first couple days post infusion.
I love my port, very easy. Ask for some ice and you should barely feel the poke. The first week after port insertion it may be swollen but after word you well forget it is there.
0 -
Jackboo, the port fitting is usually pretty easy, and the port is usable right away with very little discomfort. I am happy I have one as the every three week treatment makes it a lot easier because I hate getting poked in the arm. Use the emola cream before they access it and you hardly notice the needle going in.
I see the discussion on 4 week HP. I've never been offered that, but I'm also not NEAD. I've still got spots in the lungs and liver, but they are stable and I'm just over two years on H&P.
I have to say, that I find HP pretty easy to take. I am enjoying life pretty much as normal. I have a few minor side effects like some muscle cramping in the diaphragm and in my calves and feet, and a little bit of the perjeta itching from time to time, and a little bit of a drippy nose a couple of days in the cycle. None of those side effects last long, and they are more of an annoyance than anything that really affects my quality of life. For the most part, I feel great, I work full time, I have good energy, and I am very active.
My oncologist has some women who have been on this regimen for over five years with so sign of anything changing, so she thinks I could be on this for a long time.
Honestly, the only real problem I'm having is that I have developed a sensitivity to the adhesive they use on the clear bandages that hold the port in place during treatment. Anybody else have that issue? Gets itchy!
0 -
DGHoff, yes! I scratch little circles around my port, it starts when the cover is applied and can last for several hours after.
My port and H&P have been pretty easy too, no complaints really
0 -
Txmom, sorry to hear of your progression. I had one tiny spot on the illiac crest and one on T12. I had no pain either, but onc recommended zapping them and I agreed. That was in December 2015 and after I finished chemo with H&P. So far no progression, but I'll be due for a bone scan in May. Did you go to the RO consult and if so, what did you decide?
0 -
Txmom, I hope you chose to zap it. It’s painless and why give those cancer cells a chance to mutate. Targeted radiation has been known to create an immune response which might also help any stray cells. It won’t really hurt you so why not. SBRT got me NED.
I have been struggling and wanting to stop the AI I am on. I am ER neg (breast and liver) but one lymph node was 3/8 pos for ER. The side effects are yucky. My mo said why change things when I am NED now...I want to stop it so bad..one pill at a time. Maybe in a few years
0 -
I am 5 1-2 years out from dx. Still on h/p every 3 weeks. Ned the whole time. Super lucky. Never heard of the 4 weeks thing. Love my port. Never feel a thing. Side effects are fatigue. Seems to get worse over the years? Although my onc denies it. The day of treatment i’ Exhausted and then day 3-5. Weird. Keep on keeping on! These are kick ass drugs
0 -
Thanks Kjones13 - love hearing about 5 1/2 years. It gives me such hope. So you have been on Perjeta for 5 years as well? No issues with insurance coverage for this? My MO is concerned that my carrier will deny Perjeta after 12 months. Also, what hormonal therapy are you taking? Sorry for being nosey
0
