HERCEPTIN and/or PERJETA Threads
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Thanks for your encouragement. I am continuing Herceptin/Perjeta for now. Fortunately I had a light case of shingles. The cold sore medicine helped a lot.I went to talk to my doctor on Monday about the Port. My neck was swollen as the right arm. They sent me over to have a ultra sound done. They found a massive blood clot around the port and cath in the neck. It looked like I had the mumps on one side. They prescribed blood thinning shots for 2 weeks. They gave me one shot and my daughter gave me one the next day. However, I might be allergic to something in the shot because that night my neck worsened as did the arm...arm all red. I felt like my head was about to explode. I was in so much pain that I could hardly walk or lift my head and I could not urn my neck.
They discovered that I had a massive blood clot that round around the cath and port. It was a challenge getting out. The doctor who took it out said he thought he could do it in a different place or kind of one.. He was surprised the doctor, whom he knows put the cath up in my neck. He doesn't do it that way. But, he has to check out my blood work to see if I have a gene for making clots. Also checking for infection in clot. I am still in the hospital (now 3 days ) and my neck is still swollen, and right arm. It is not as red...but I look horrible. I'm discouraged because it is almost Christmas and I want to be home. Pray for me.
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You betcha, H, sending my form of prayers. Hang tough, we are rooting for you. SUE
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Nice to meetcha, klynn. Sounds like you have been doing this for a long time. Although you seem to have gone thru so much, still your many years give me hope. SUE
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Hindsfeet - I'm so sorry that you are going through this especially so close to the holidays. Was a new port inserted or do you have to wait for the blood test results first? You will be in my prayers. Hope tomorrow is a better day - Karen
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hinds feet. You are in my prayers
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Wow, Hindsfeet, I'm just starting to read some of what you have been through...phewww.....I thought mine hurt....no more complaining after hearing your troubles...that's awful....will keep you in my thoughts...hoping you will be home shortly, and feeling well enough to enjoy your Christmas holidays......This one day at a time thing is tough, I too just want to be able to "plan" out a months worth of activities without incident....of any medical kind....well wishes to you..!!!.. Klynn....<3...
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Hi All-I'm totally new to this group but thought it was a good idea to reach out to other people like myself. In Aug. 2010, I was diagnosed with Stage 2b ER+.PR+ and Her2 + breast cancer-I underwent a radical lumpectomy on my left breast (w/lymph node involvement), followed by the chemo and then Herceptin. All was going great for the next three years. Unfortunately, now I have had a new occurrence in the same breast but the tumor is only Her2+ this time (only occurs in 4 % of patients) and now following the PET scan I've learned that it has "crossed over" to my right side lymph node (only occurs in 2 % of patients). My oncologist has started me on neo-adjuvant treatment every three weeks with Herceptin, Perjeta and Taxotere. Just received my first treatment two days ago and I must say, definitely not as harsh as the prior chemo treatments I received last time. In three months or so, I will be undergoing a double mastectomy. Just wondering if anyone else out there had any similar situation since I apparently seem to be falling into these crazy statistical odds? I would welcome any "helpful hints" or recommendations from you all and I thank you for taking the time to post.0 -
Hi Fran2014, There are a few women with changes in their pathology, I am not sure about the "crossed over", I am sure somebody will post. My original cancer was er+pr+ her2-, had neo chemo then mastectomy and the pathology came back er+pr+her2+. Just before radiation started, we found mets in my bones. My cancer also seems unusual because it is lobular and I am brca2+. I am currently on perjecta, Herceptin and taxotere and it has been a little harder for me than taxol, easier than a/c but I am hoping it kicks my bone mets to the curb.I don't know if I have any helpful hints but the treatment that you are going to have has shown great promise!
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Hi Fran, my earlier stage events all occurred on my right side (breast with lymph node involvement). When they discovered cancer in my LEFT nodes (under the arm) they couldn't find a source tumor in either breast. It was unusual enough to go to the tumor board and some if the oncs thought it was a "cross over" and some thought it was a new event - never resolved. Was quickly determined to be mets anyway, so sorta a moot point. By the way, they finally found a teeny little tumor in the left breast. Also I had changed from ER/PR + to ER/PR -, but have been HER2+ all the way. This disease is crazy and not logical. SUE
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Hello! For those of you that are on Herceptin and Perjeta only, are you still going for blood work prior to treatment? I am. Just wondering if others are. - Karen
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Yup, every single time. Geez! SU
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Thanks for responding Sue. I'm glad I'm not the only one. As I was walking into the hospital today in the pouring rain to have the blood work done, I was just not into it. Maybe it's the weather, maybe it's the holidays but today it felt like a big pain in the rear-end.
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Karen, do you get your bloods done just prior to your infusions or on a different day? Mine are done just prior to assure that I can even have the infusions (to be certain that I am not too anemic, etc.). My tumor markers have never shown any change, not even when my cancer was most active - go figure. SUE
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Holy Smokes...I've missed lots in the past couple weeks! Hindsfeet...you deserve a break! Sorry your port was a pain...hoping your new one is much improved & the clotting problem solved. I agree it can feel so foreign & painful for a long while, but my 2nd one is a silly millimeter away from where my first one was and it's so much better (but maybe knowing I'm stuck w/this one makes it tolerable!). K...14 years is Awesome...and yes, a sense of humor that's survived too!!!
Mik...I also have blood workup before every h/p. I like my blood center nurses so I'm always glad to stop there first. We have "history!" I agree that perjeta stinks...I think it's causing my eye problems. Sue...just got a new perscription, 4 months after the last "new" one. Luckily my eye dr is filling it w/out charge. It's really just my R eye...which is strange...of course it makes me wonder if there's something growing inside that side of my brain-never a dull moment!
Kwagart...love your picture...you two are so sweet!!!
Will be thinking of all of you getting our life saving meds on Christmas & New Year's Eve..may they give us more and more precious time!!!!
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I go for my H/P treatment today (12/24), and I'm always grateful in hopes that it is still going to do the job for me for many years to come. As far as blood work is concerned, my labs are always scheduled about two-three days before treatment, and I've never had to delay treatment because of lab results.
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Thanks for the info everyone. I was curious if it is standard protocol that we have blood work done prior to each treatment. I have blood work done prior to my onc appointment which is always the day before treatment. I have an onc appointment every three weeks as well.
Wishing us all a peaceful holiday. All the best to you and your loved ones. - Karen
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RonnieKay
Thanks, I like your picture too!
I wanted to let you know that with taxol and taxotere (which I Have with perjeta and herceptin so one of those) I have lots of blurred vision in my left eye. I am happy to say that this morning my MO informed me that my head scan was clear! No brain or eye mets! I hope that eases your mind about your right eye.
Merry Christmas and Happy Holidays to everyone!
Kim
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good for you Kim. Folks,Do you find you are less fatigued on p and h alone?
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bhd1: Yes, as soon as I was finished with Taxotere and just on H & P, my energy levels seemed to go up quite a bit. There are occasional days, however, when I feel somewhat tired. Don't know if it could be the H & P or just an age thing. Ann
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Second what the excellent Ronnie said: thinking of you, Fitz, Teakie, and all the others who are getting our life saving treatments on Christmas Eve. Indeed, may they help to bring us a strong, healthy, happy new year. Fondly, SUE
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Still too soon for me to tell, Barb, have only re-started (one treatment so far). It surely will be nice to only go to the infusion center once every three weeks. I will tell you this - getting Christmas together certainly wore me out this year. Note to self: simplify, simplify... Fondly, SUE
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HOTCHA! Great news Kim. Now on to a worry free holiday season. SUE
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Thanks guys!
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Hello lovely ladies..
Thank you for the welcomes here...I hope everyone had really nice holidays..and were able to enjoy them...We all tend to push ourselves, to the point of total exhaustion, but when you have those few days of feeling good, you just want to fit so much in.....I spent 5 days in bed just before Christmas Day, not sure if it was a virus, or just the effects of the third taxatere in a row, but I seemed to just fill up with phlegm...ughhhh. No infection, no fever, but the chills mad a constant draining of mucus..which of course turned into coughing fits...never got out of bed...5 days, just not like me at all...I really think the taxatere is finally just wearing me down....I've been on it since the end of May with the Herceptin and perjeta, and I really don't know how much more of it I can take...I hate to b**tch about another drug, especially since he feels it is working???I hate the thought of going thru another drug...the grass isn't always greener ya know..??...My hair ( well, if you can call it THAT...LOL..) is finally just about an inch and a half to two inches long...it's awful, but at least it adds warm comfort...I'm dying to color it, since it has decided to come in a half grey...I hate the cotton candy texture..this time it isn't coming in with that tight curl, but straight in some places, wavy in others...I think the only reason it is coming in at all is that after getting the initial first full dose , he decided to give me three lesser doses , three weeks in a row...I almost feel at this point one strong dose once a month would be easier, but I hate the thought of losing what little I have grown already....oh, sorry about the rambling, just one of those crazy days of trying to figure out where I want to go with my treatments....My onc loves when I start this....
Hoping everyone is having enjoyable holidays, and can all welcome in the New Year in a festive way...I just hate always being the sick one...I'm seriously looking forward to being only on the Herceptin and perjeta alone Teakie -Ann you give me hope hearing your energy level went up.....K...
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thought I was going to dodge the acne,,,its back!
I am doing weekly taxol. with every 3 h/p and the second week was okay. much less side effects.
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KLynn - seems like our hair is on the same schedule! Monday will be my 6th Taxotere. What didn't fall out just keeps growing. It hurts when I smash it under my wig, but I don't dare trim it!
Fitz- I get the acne too and had hoped it was the taxotere. Minocycline seems to help, but I hate being on antibiotics.
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Woohoo Kim!! Thanks for the good news on no new mets (but they may need to add seeing eye dogs to our insurance!).
Barb..for me, it took about 3 weeks before I felt less fatigued on my h/p only regimen. I asked my onc if it was a mental thing and he said no, missing the first scheduled dose of chemo can have an immediate affect on how you feel. I noticed more energy on my walks & every day activities. I hope this lasts a long time!
Fitz & Shutter...acne...ugh! Just seems wrong for that se!!!
Sue...Got our tree on the 12th, lights on the 19th, 21st the fuse blew, 23rd trimmed tree, 24th decorated apt...Definitely simplified here & the kids walked in and said it was beautiful! You can do it...next year
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Thanks Sue for the response. Your situation sounds very similar to mine (all so crazy!!). Now that my first treatment is done, this past week has been a little rougher than I had hoped (especially on my stomach) but I was able to spend the holidays with family so it was all good. I feel very fortunate to have found this site-thanks for the feedback!0 -
Fran, the folks on this site are fantastic, and we all stand together with one another. Glad you found us too. Good luck with your next treatment - let us know. SUE
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Hope everyone had a good holiday! It's interesting how every onc does testing differently. I get a CBC, chem panel and tumor marker every other treatment, so every 6 weeks. Before I restarted Perjeta my tumor marker was up 10 points (my marker has a pretty narrow range of about 30 points from the highest point at diagnosis to the lowest point on treatment, so that was a big jump for me). I've had 2 more readings now on H&P together, and it has gone back down almost to my best levels from before. Maybe it's coincidence -but maybe the extra Her2 blockade is helping keep the lid on the bad cells! Thank you to the scientists who are helping us stay one step ahead!
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