HERCEPTIN and/or PERJETA Threads
Comments
-
Woohoo Shutterbug...such happy news! Hearing the word stable...so incredible!! May it be forever
Miche...my onc is part of the vaccine study. When he decided to stop chemo (I also am stable w/what they believe to be shrinking scars...no C activity), he said the longer I can be off & gain strength, the more likely there may be something, such as the vaccine, available. Oh, how I hope!!!
Tjg2...we're here for you...don't rule out taking that trip....I'm hoping we hear all about it
0 -
Thanks KJones! If we all can help eachother get over these stupid humps then we can spend our time here more positively and have some fun. I think after I have my reconstruction on the 28th my attitude will improve. That will get rid of some pain from these expanders and hopefully allow me to get some much needed sleep! If in addition I can get rid of this depression and hot flashes, WOW then I would be on my way to some really improved quality of life! I just have to be patient.....never been my strong suit, HA!0 -
Thank you all for the well wishes. I am feeling pretty good about where I am in this crazy cycle of ups and downs…trying to enjoy it while it lasts. Making plans for Spring, but I need to work on my endurance. I can barely make it across a parking lot without being out of breath!
TJG2 – if I'm not mistaken, I think Mikarae metioned using Effexor for both hot flashes and depression. That's a nugget that I'm tucking into my "in case I need this info one day" bag. (Thank you Mikarae/Karen!)
I'm interested in what you ladies find out about the vaccine studies. Unfortunately my oncologist has not been very forthcoming with study information. He feels that if I'm stable I should wait until it is time to switch treatment methods and then see what is available. I just like to think ahead, I guess. I'm still kicking around the idea of a second opinion at a different hospital.
0 -
Hi Miche,
I did an earlier vaccine trial in Seattle beginning in Oct, 2011. I think it is similar to the one you mentioned as the dr in charge was the one in charge of mine.
I think they are taking the basic her2 vaccine and trying to increase the efficacy by adding in other drugs.
The good thing with this one is that they let you stay on Herceptin. I had to take a 5 month break while I did the trial. Are you Ned? You have to be Ned or stable bone mets only to qualify for the vaccine trials.
People ask me all of the time if I think it helped me. I really don't know. I am doing well ( I will be Ned 4 years next month) but don't know if it is from the meds or from the vaccine.
There are not a lot of downsides to doing the trial, other than the traveling and the pain. (the shots were the most painful thing I have ever experienced and I have had a lot of procedures/ surgeries in my life) but I have talked to another woman who did the trial and she didn't think the shots were bad, so maybe i am just a wimp!
Laurie0 -
Thanks everyone!
Shutterbug, do you get echograms?
What is this vaccine thing? Oh, I think it is for bone met, but that makes no sense as you had liver mets like me, Lauriesh.
I know this is selfish, but I don't want to be "in" a study. I'm afraid if I get in a study and something great comes along, I'll be excluded because of the study.
I definitely don't want to do any more shots after neulasta! GOD ALMIGHTY!!! I was one of the 30%ers that had excruciating pain. Hydrocondrin did nothing for my pain.
My son bought a house last May and I'd like to go see it this spring...tall order since my husband won't let me drive up there by myself and he is not going to be able to go. We have a "zoo" that is very spoiled and boarding them all is out of the question and bringing someone in is difficult as one of our dogs is afraid of everyone except us. I also have decided that I want to go to the Budweiser Clydesdale farm in Missouri on that same trip. Well, at least I'm dreaming a little bit now, the past month I've been blue.
I have to make an appt. with my gyn tomorrow so I can try to get that Eff drug.....TOO COOL, possibly fix depression and hot flashes! Get this surgery done next week and then a lot of waste up pain can within a reasonable time go away. They I just have to hammer away at the other side effects. I'm screwed up 7-10 days after P&H treatment. I work from home during that time so I can be close to the bathroom...nothing works so far. But, I usually slam 96 oz of water that night and the next day and I'm thinking that may have something to do with it. Maybe it is not necessary to flush P&H out so fast as taxotere.
Between all of us maybe we can hit all these side effects and be 53 year old women with 40 year mindsets and ditch this 90 year old feeling body!
0 -
Hi TJG2 - Yes, I just recently had an Echo and it came back fine. It think I'm out of shape from sitting on my behind since June, which is when the bone mets pain started. My doctor has suggested spinning classes or swimming, so I'm looking into those possibilities. My blood cells are still a wee bit low from the Taxotere too, so I should probably cut myself some slack for now.
I'm glad I never needed that Neulasta shot after hearing about your pain!I hope you and your doctor are able to find something that works for your hot flashes and that you are able to make the trip to see your son's new house.
0 -
Shutterbug, that is great news that your echogram was good! Taxotere will knock you on your butt. I'm less tired now that I'm off it. Neulasta was part of my protocol because insurance covered it. Had they not covered it, I wouldn't have gotten it.
It freaks me out how similar cases are handled so differently. Rads first, surgery first, chemo first....where's the rhyme or reason?!\
0 -
Lauriesh: you wrote "I think they are taking the basic her2 vaccine and trying to increase the efficacy by adding in other drugs." What was the other drug when you did it? This time they're adding mushroom tea so they won't take people who take mushroom supplements. I'm sure you are not a wimp and the pain doesn't sound good but from what I've been able to find out the preliminary results look promising. It's fantastic that your NED for so many years. Wonder if the vaccine did it.
TJG2, I would hope your MO would put you on Neulasta because your blood counts were low, not because insurance covered it. I did the first round without and then because of low blood counts my MO added Neulasta--which worked very well but did make be very creaky and sore. It shouldn't be given just because--though you can sometimes wonder why doctors make the decisions they do. Hey, can you visit the Clydesdales? I'll come and pick you up and we can visit together! Well, maybe not, I'm in Maine. Missouri would be a long haul. Here's a photo of my 1/2 Clydesdale, Bugsie, enjoying a dinner party : )
Shutterbug, glad your ejection fraction is good. And yea, give yourself some slack, it took me months to recover from the last Taxotere infusion. I was doing stuff and thought I should be recovered but then later this fall suddenly I felt much better and I realized how compromised I'd been. Now it's just the ongoing H&P SEs.
Yep, I'm with you TJG2, ditch the 90 year old feeling in the young at heart body!
0 -
Miche,
I don't remember what the drug was, but I am thinking it must not have been as successful as they hoped for as they are trying this mushroom tea now.
What kind of results have you heard about?
I think I remember hearing that with the original vaccine alone, 30% of the women were still Ned 5 years later.
Laurie0 -
Yeah on Stable, wish I would have tried the cold cap! darn. My scalp is super red and sore. I am on Taxol.
TJg2--As to mood swings,depression, hot flashes, all chemo side effects,,,even after you are done. Some meds do help, like effexor.
0 -
One of my chemo nurse's MIL is on the mushroom tea study....didn't know that was the vaccine study...gotta read that info. Prob 8 months ago, a young man at the boot shop (hubby got new boots) told me about the turkey mushroom...his mom had bc.
Tjg2....are you doing diep or implants? Good luck! Expanders are awful...glad you have relief in sight, although healing from diep is tough. If insurance hadn't covered neulasta, they prob would've done neupigen, it's less costly...like Miche said, they wouldn't be able to do chemo if your counts were too long (been there)...ahhhh, the magic of building white cells just to obliterate them. Taking Claritin daily, I hardly felt anything with my regular neulasta.
Miche...sweetest pic ever!!! Flowers, wine & furry animals
Took a side trip to ER Sunday...early, so I didn't miss the Seahawk game! I had some leg pain, swelling, heat. I have some varicose veins so they always do a Doppler to make sure there's no clot. Evidentially, my walking 4 miles a day in CA led to my baker's cyst behind my knee (not serious...an arthritis gift) leaking some fluid, which causes inflammation. However, she announced beautiful veins. Any good news about body parts during this journey makes me so happy!!!
Shutter...your energy will return...slow & steady
0 -
I am very new to this. I was just diagnosed this week. IDC, 4.5cm, the one ax lymph node they biopsied is malignant. I will have a CT and bone scan tomorrow. Recommended therapy (immediately)is Herceptin + Perjeta + Taxodere + a second chemo drug whose name escapes me now. I will ask Onc tomorrow. I started reading this board from the top. I got through 3 pages but am anxious to know if anyone else is doing this four drug combo? I think the drs are thinking the worst for the scans tomorrow and so am I. Oh, I am her2+ and ER and PR negative. Haven't been staged yet.
0 -
Hi SugarCakes mom was on this combo 4th drug zometa for bones..she handled chemo really well did lose hair before 2nd infusion, by 5th infusion developed temp rash but other than that was pretty good. Our own thoughts are our worst enemy. This board has been such a comfort. With all new treatment options for Cancer, having Cancer is not what it used to be, Take care.
0 -
Sugar Cakes...hoping for better news than what drs are alluding to tomorrow...meaning no movement of cells past breast & lymph node....which is, of course, worrisome enough. Many of us have been through the treatment you're talking about, at different stages. You may be doing adriamyacin or cytoxen. You're lucky to have the benefit of perjeta, which is a newer biologic & shows good results w/herceptin. Please let us know how your scans turn out...of course, we all hope it's not stage 4...but if so, we are here for you!
0 -
Miche-Beautiful horse! We have three dogs, three cats, and a blue and gold macaw. One of our dogs is afraid of everyone except my husband and I so for us to go somewhere over night would be real hard on her. And finding someone not afraid to feed the bird is also challenging. He is not keen on me driving by myself so I don't know if the trip can happen or not.
I'm pretty sure the cancer treatment group I go to gives every one some sort of immunity shot. My counts would drop but come back up quickly...I just figured because of the shot. Supposedly you are to be able to live a more normal life if you get the shot. All I know is I never had a cold or anything while taking taxotere and am grateful for that.
I'm going to my regular Dr. 2/10 so maybe I can get on that effexor! I'm very encouraged to possibly knock out two side effects, depression and hot flashes which lead to fatigue, which causes more pain! The possibility of my quality of life coming up a notch is very exciting.
I'm getting implants on Wednesday, 1/28. It should be a much easier recovery than diep. I don't have any donor fat to use. Through this whole thing though, I gained 2 pounds so we're calling that a win! Once I get past this surgery, then the whole initial cancer fight is done and I'll just be in this perpetual maintenance phase. My new, new normal. As someone noted earlier, we will never have our old normal life back again.
RonnieK good news no clots! AND HOW BOUT THEM SEAHAWKS! Since the Boys are out, we'll be rooting for the Hawks.
Sugarcakes - they want to prepare you just in case, I hope it went well for you. Jmo6 is correct, cancer treatment is much kinder and gentler than previously....even though we complain a lot. Once you get past these preliminary scans and your second treatment, you'll just get into a routine and that helps a lot. Keeping the psyche in check is the hardest thing for me.
Hope y'all have a great weekend!
0 -
Great picture Miche! Bugsie looks right at home at the table.
I'll have to look into the mushroom tea you ladies are talking about. I haven't heard about that before.
RonniKay - Glad your leg issues turned out not to be serious and congratulations on your beautiful veins! We truely need to celebrate every victory!
SugarCakes - I hope your bone scan comes back with good results. I was orinally going to be on 2 chemo drugs and Herceptin and Perjeta, but they removed one of the chemo drugs when they found the bone mets. At that point treatment became palliative and not curative. I had a relatively easy time with the Taxotere. Please check back in with us when you can. Hoping for the best for you
0 -
thanks everyone for the kind words and wishes. My CT and bone scans' preliminary results are normal!!! And the Med Onc expects the final results to be the same. Three days into the official breast cancer diagnosis and that news had me elated. I have come down from that high but feel better and more optimistic than I was feeling before. That was a lot of weight off my shoulders.
Oh, the 2nd chemo drug will be Carboplatin. So I will be TCHP. Left Onc a message this morning at 3am letting him know I'd like to start Feb 3rd, if possible. I'm going to enjoy the weekend. Super Bowl party at my house. Go Russel Wilson! He doesn't stop and nor will I! Go Seattle!
0 -
That is wonderful news SugarCakes. Enjoy your weekend!
0 -
SugarCakes: I'm thrilled to hear your good news too! Ann
0 -
I am struggling trying to wrap my head around my DX yet. I will just be watching TV and my mind will just "go there". I know I could live for many years. But I am having a really hard tring to stay positive. I think I may need to see a counselor. I have my third infusion Wednesday, I know I'm having a good response to the drugs as the tumor that was palpable is gone. I have 8 bone mets. I am supposed to have some sort of a scan sometime after this infusion. How do you accept This and move on? Or don't you...
0 -
luv2fish i know diagnosis is hard we have had lots of ups an downs take comfort that knowing there is so much treatment avab for bone mets, the way that was explained to be is that this is a disease like diabates etc as long as take your meds you can keep under control. But admit at first was hard to soak in, i think what makes it feel worse is having a 3 week reminder with infusion of how serius it is instead of being able to just pop a pill at home.
0 -
luv2fish - I'm sorry to read about your struggles with diagnosis. For me, it took many months to accept it and to start feeling somewhat grounded. However, I still have days when I struggle with positivity. I think seeing a counsellor is a fine idea. Sometimes it helps to speak with someone who isn't a family member or friend.
I did a test with the speed of my infusions. I found when I asked to slow the infusions down (Perjeta at an hour and Herceptin at 45 minutes) my joint pain and muscle pain was decreased significantly. Two treatments ago, the infusions were given at the prescribed speed (30 minutes for both Perjeta and Herceptin). That time my joint and muscle pain was terrible. Also much more fatigue. I'm going to continue with the slower infusions and hopefully the side effects will be less severe.
Karen
0 -
Hi, I could use some advice, I started perjeta 3 weeks ago. I find that my mouth is hurting a lot. Teeth and gums irritated. Has anyone else had this side effect? If so, have you found any relief? I have been rinsing with baking soda water, but not much relief. Thanks to all of you for sharing your knowledge. The support makes it so much better. Thanks.
0 -
my mom has been struggling with a face rash usually happens 5 days after infusion and lasts 1 to 2 weeks. anyone else?
0 -
Reneeswan and Jmo06 - I have sensitive gums after treatment for about a week. I brush with Sensodyne toothpaste. It helps. I'm going to try your baking soda rinse. I had a terrible rash on my face and neck after my first infusion. It was the only time I had a rash. I was prescribed hydrocortisone 2% cream. It successfully got rid of the rash. - Karen
0 -
Reneeswan - I use Biotine at night, which was recommended by my dentist. Rinsing several times a day with salt water was also suggested, although I never seemed to remember to do it.
Jmo06 - I almost always get an acne-like rash on my face, neck and arms. The severity varies. Now I take an antibiotic (minocycline) starting the day after my infusion until all spots have gone away (usually about 6 days) and that seems to keep it from getting too bad.
Luv2Fish - I still struggle too. I'm fine for awhile, and then suddenly it all seems like too much to comprehend again. I attend a support group, and there is a wonderful Social Worker who is available at my cancer center. I am considering professional counseling too. It is a lot to deal with, and there is nothing wrong with asking for help. Anti-anxiety drugs help too.
0 -
Thanks ladies will ask dr next time
Shutterbug73 your right nothing wrong with seeking help!!!
0 -
Renee...I used biotine while on chemo, it helped w/dry mouth. Now I use sensodyne to help sensitive gums. Salt water rinses help me a lot....along w/electric toothbrushing, which I think is less irritating.
Luv2fish...this is a tough journey, and we all have those moments of worry & wonder. As time goes by, life takes on a bit of normalcy (yes, a different type normal), and hopefully, the clouds part. I think seeing a counselor is a great thing. I wish you peace...and do hope!!! It's a very important part of healing...mentally, especially.
As far as some of the ses we have, I tend to think perjeta has a mixed bag of ses, and I think our being in on the beginning of long-term use finds us thankful for this place of support! I am truly thankful to have a break from chemo, and so hope these biologics help it last a long while, but it's interesting how different I felt on herceptin the first go around, from how I feel w/perjeta added. Not monumental things, considering the great study results, but a new one: I've developed a few lumps in my lips...odd, and just obvious to me, but odd. My onc didn't think it was a big deal, but it's got to be a se & I think those things should be recorded...somewhere. Anybody else have lumps in your lips...LOL!!!!!
0 -
Sorry RonnieKay, but I'm lumpless on my lips and elsewhere! Ann
0 -
No lumps here, Ronnie, but thanks for the heads up. Man, what we gotta put up with! Keep on dancing, hon. SUE
0
