HERCEPTIN and/or PERJETA Threads
Comments
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mara51606, Thank you for the good advice, paul
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DhfHoff, Thank you so much for the info, unfortunately I am stage 4 and have to stay on the chemo, I am going to try Immodium
Thanks again, Paula
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Bluefrog76, this was a great read about her2 status, just wondering how many onco go and recheck to see the stays of her if it has changed, I live in a small town in the up of Michigan O wonder if they know this up here?
Thank you again, Paula
P.s. Just curious, how are u doing
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kjones13, yes I can definitely relate, so tired of the diarrhea going to take Immodium and see if that helps, I also get pains ribs, liver? Not sure very annoying.
Thank you, Paula at least iM not al
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Hi Everyone, I get the pain too down the ribs/liver area after infusion. I do not have liver mets. I always thought it was a gi issue. IDK what it is but as long as it's not cancer, it's all good. lol
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That is so interesting to hear that others get the pain in the ribs liver area after infusion. It's always particularly noticeable for the first few days, and then it starts to taper off. It's mostly gone by the time I go in for the next round, but then it starts back up again. I think it just must be GI stuff from the Perjeta.
Weigp22 - I am also stage 4 but I was able to drop the Taxol after 5 months due to good response. I still get H/P and will, probably forever, but at least I don't have the Taxol now. How long have you been on it? If scans show regression, maybe you will be able to take a break for awhile. Probiotics also helps with the diarrhea issue so with that and the Immodium I hope you get relief.
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shutterbug, I was diagnosed right off the bat also stage 4, i am on taxotere and hp, will go for my 4th tx soon, I was told I have to stay on taxotere for 8 cycles and I already have neuropathy, I wonder if I should only do 6?
Paul
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Hi Paula, you should probably mention the neuropathy. Have you had your first set of scans to see if you are responding to treatment?
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Paula, Is your Onc suggesting 8 rounds of taxotere? It's really nasty stuff and I've never recovered from the neuropathy from 6 rounds. I'm 3 years out. It's possible the Perjeta and Herceptin cause it but I'm guessing it's from the taxotere. Anyway, I heard on these boards 8 was better than 6 and my Oncologist said--wait--you want a good quality of life after this. 6 rounds is the standard. We can look at tumor markers and get a scan after 6 rounds. So that's what I did. Herceptin and Perjeta are also very effective on HER2+ mets. She started checking my tumor markers after round 2 or 3 then once a month and 4 months after starting treatment they were plummeting. After round 6 I had another body scan. I've been NED for 2 and a half years. Just my 2 cents.
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I did 8 rounds of taxotere with H&P. I iced my feet, hands and mouth during taxotere and have no residual effects. Just had a CT scan today and I'm confident I'm doing great
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Hi ladies,
I have been on H&P for about 2.5 years now. The itching from Perjeta is killing me! My MO and I spoke about possibly stopping Perjeta, but I am terrified of stopping. Has anyone had luck with something for the itch? I have tried almost every topical steroid out there. I basically need to take benadryl or clonazepam in order to get any sleep.
I read in a few of the posts that diarrhea is an issue, talk to your dr about activated charcoal. I was taking one capsule for 3 days after treatment, and it seemed to have worked. I stopped taking the charcoal now and the diarrhea hasn't been so bad.
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Hi Basia,
I find that benadryl, even a low dose (children's Benadryl), helps me sleep at night. I do not take it every night. Ice packs work. You can buy a soft-gel cold pack that wraps around your arm, for example, and sleep that way. I find that drinking a lot of water and staying out of the sun helps too.
One more thing - do you have any lymphedema? I have mild lymphedema in one arm. I find that the itching is better controlled when the lymphedema is better controlled.
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Michethevan
I am going for my fifth tx of taxotere, perjeta and herceptin, will also have scan before thx do you think I should have waited until my sixth tx cause really having scan right before my 5th tx so it would be after 4 treatments
Tell me what u think
Thanks, Paula
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Hi, I find that rubbing lotion on my skin helps with the Perjeta itch. It is usually bad for me if I'm hot and sweaty so I try to shower after exercise...I can't remember when I scanned after Taxotere but I want to say it was after the 6th and 9th cycle.
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Thanks Ladies.
Went to see an allergist today, thinking outside the box, but unfortunately, he had nothing new to add to the conversation. He called a couple oncologists he has worked with in the past and they all concurred there is nothing out there to combat the Perjeta itch. The best thing they could come up with is low dose prednisone on days 2-4. When he called my oncologist to discuss his recommendations, the Genentech rep was sitting with the MO's PA discussing the itch situation. Hoping they came up with a better solution.
I did find that taking Milk Thistle helped somewhat. My rash cleared up almost over night, but over the weekend, I was exposed to something that brought it all back. That is what made me think it may be an allergic reaction to something else.
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Wiegp22
I had my first Scan in June 2015, 9 weeks after first starting treament (taxotere, H&P).
This morning 16th Feb I received a phone call from my Oncologist to say that my CT & MRI scans (13th Feb) and Bone scan (14th Feb) were all Great with nothing new to report and no issues for me to worry about. I have been on H&P since October 2015.
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I hate to say this because it seems to be discontinued but Uremol 20 or Uremol 10 (made by Stiefel) stops the itching for me. I could get it in Canada but last time I was up there I couldn't find it.
From the web: Discontinued! "Uremol is a naturally-occurring moisturizing agent that attracts water to the skin, relieves the itching that comes from extreme dryness, and softens and smoothes the skin. Uremol is manufactured and distributed by Stiefel, one of the leading dermatology company providing healthcare professionals with more than 30 years of experience and service."
If it's the urea that stops the itching then Eucerine or Urisec might work. Might have to get the urea lotions in Canada, I'm not sure.
I did find this though: http://torontodermatologycentre.com/UserFiles/File/SkinTherapyLetter-Feb.2011,MoisturizersinDrySkin&Eczema-Family Physician Edition.pdf
"Urea, the active ingredient in Urisec 12%, is naturally present in the outer layer of the skin and is well established, scientifically proven, potent therapy against the pain and itching of dry skin. It is a powerful hydrating, moisturizing agent, that helps to maintain the integrity of the skin.
Urea 40% cream is a potent keratolytic that is not suitable for use as a regular moisturizer."
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Hi, this is my first time posting in this thread. Could someone fill me in on the itching? I've just started to get this awful itching on my arms and legs after almost 6 months on Taxol, Herceptin, and Perjeta. I do have a history of eczema and sensitive skin, so I never know what might be causing my itching. However, this itch is different, more intense. Is it likely caused by Herceptin or Perjeta?
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Hi Lisa,
The consensus is that it is probably Perjeta. The itching originates in the nerves. Here are a few things that I find help:
* At night, take a Benadryl. For me, it stops the itching and helps put me to sleep. But beware: Only use it when you need it. It will give you fierce gastro-intestinal discomfort if you use it too frequently.
* If you place a cold pack on the area that is itching, it goes away.
* If you work out, get sweaty or dirty, take a shower. That seems to reduce irritation.
* Drink lots of water.
* Cover up in the sun
* Get a good moisturizer for sensitive skin.
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Thank you, this explains a lot! I have noticed that I get extra itchy with exercise. I thought I was doing a good job of hydrating, but I am now doubling my water intake.
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Just stopping by to say Hi! Hi! I had scans a couple of weeks ago and remain stable. My tumor markers have risen though from 25 to 37. I don't have scans until June. She moved me to 4 months instead of 3. I'm a little nervous about the tumor markers rising though. Hope everyone is feeling good. XO
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txmom happy to hear that your scans are stable. Stable scans are always good news. I am disappointed to see that this topic has gone off the radar as based on the treads I thought that there was quite a number of us on this protocol. It was more often than not a lift to see how others were coping and handling treatment. Anyway, I only hope that all those still receiving Herceptin and Perjeta are doing well.
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I've been on TDM1/Kadcyla for 9 months but have just received news that I have progression. Usually THP precedes TDM1 but my onc and I decided to start with TDM1 as I had been given Taxol as a treatment for my primary cancer less than 2 years previously. My onc thinks I should continue with TDM1 for another 3 infusions as I have very few SEs and my progression isn't giving me any significant symptoms (a new tumour in my lymph node and 2 very small suspected tumours in my lung). His primary concern seems to be quality of life whereas my 'lets get this fixed' approach is shouting at me that I should move on to THP immediately. I'm in a quandary and would really appreciate anyone's thoughts or experience on this. Many thanks.
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Hi FM508, thanks, yes, this thread kind of goes in spurts. It's not as busy as the other threads. I think maybe because this is a pretty easy protocol with not a lot of side effects. Idk though, that is just my guess.
Catsteme, I don't have any experience with TDM1 so I can't give any advice. I'm sorry. Not sure if there is a TDM1 thread.
Hope everyone is doing well and feeling good. XO
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I lurk as I am not in this protocall but probably will be when my current therapy doesn't work anymore. I appreciate everyone's comment
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Hi
My name is Liz and I live in the UK. I have been active on the "shadow is recurrence " thread on a Stage 4 boards.
Finally got treatment plan yesterday and it will be Taxotere, Herceptin & Perjeta. X6 Taxotere. Due to start in 2 weeks. I went 6 years NED and so all this is a huge shock,
My mets is to the chest and involves the metisidinal lymph nodes, chest area 3 cm. no other mets yet but bone scan planned.
I can't seem to find anyone with spread to this area? My onco says that this regime is the standard of care.
Came home last night and very upset. In total meltdown over T even though I got through 6 cycles before.
I try to think that if I can get through the Taxotere I will then have a period of stability where I can hope for some normality. We had a week's holiday booked in August but I'll be finishing up Taxotere. I tolerated Herceptin very well.
My onco says cyber knife could be possible if the chemo shrinks the tumour away from blood vessels. So very scared but I'm relieved to have the contact and comfort of the amazing women on this board. I post regularly and hope to talk to you all.
Liz
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Thanks txmom, yes I think your right!!
Hi jackboo09, the shock of a metastatic diagnosis is without doubt the most frightening and upsetting news that I was ever given. I was diagnosed with mets to lung, spine (L3/4) and hip in March of 2015. I did 9 taxoteres (I tolerated it very well!!) with H&P and came off taxotere at the end of September 2015. Since then, I just receive H&P every three weeks along with Zometa (every nine weeks). I am happy to say that all is stable and I am feeling great. So, bearing that in mind, know that you are about to receive treatment that has a proven track record. Don't forget to visit your dentist before you start your treatment. You'll get through this and please God your disease will be under control and life will continue, don't rule out your holiday in August yet as I did Spain for just under 3 weeks in July 2015 and all was fine!! Onwards and Up. x
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Hi FM58
Thank you for your very helpful comments. Wow managing 9 treatments of Taxotere is quite some achievement. I presume the extra doses past number 6 is recommended?
It is encouraging to see that you have tolerated the regime so well and are stable. I have a small tumour in my chest very close to the major vessels. Can I hope that THP will shrink it or is the objective to just hold it steady. It's important in my case as I may be able to have cyber knife rads.
Knowing that this tx has a proven track record to quote you, does really help? But also I'm delighted that you are feeling well. The holiday in August just clashes I think with being in treatment. We have 3 teenagers and they will be disappointed. Maybe they could delay a chemo and allow me to go and then start up again? Has anyone had this kind of holiday pass?
Your words have given me great comfort about life on the other side of this next phase.
Liz
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I had a trip planned and I went. I delayed everything one week. I wouldn't want to prolong anything more. Hopefully your treatment will fall on dates that make it poss
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Bstein,
I will look again at dates. Did you feel ok during your trip
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