HERCEPTIN and/or PERJETA Threads
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Lisa. It is awful to feel the way you do. I have no wise words but suggest you find a psychologist or social worker you can talk to. I have had some days when I feel like you do. I hope the good people on this site can offer you the solace and hope. They have certainly helped me in the past 7 months. Markers can go up without progression. Some say tumor cells dying can cause it to rise. Mets are a shock. Sending you good thoughts.
I am new to this thread. I’m just on Herceptin and Faslodex after stopping Ibrance because my counts dropped after 2 months. I was on Herceptin for 1 year in 2006. I tolerated it well and hope it works again.
I’ll have to ask about Perjeta at my next appt. Meanwhile I keep reading.
Maire0 -
Tamoxifen is well known for the joint pain, which I believe is caused by the lack of estrogen not necessarily the tamoxifen itself. My MO suggested glucosamine/condroiten daily. It took a couple months to get the full effect but my joint pain is very minimal now, isolated to my fingers and not noticeable after being awake and moving for a few minutes. Just a thought
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Lisa- so sorry your are in so much pain. No one is "sick of your whining" we know how you feel. Talk to your doctor about the pain, they may be able to help. It seemed to help me some if they slowed the rate the Herceptin went into me.
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Lisa...we are not "sick" of you....we are here for you. Please try and not think of yourself as dying from MBC....but living with MBC. We are all in the same boat. MBC is not an immediate death sentence and to treat it like it is discredites us all. We are here.
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Hi Lisa - I also repeat the above encouragement. One small thing you could ask for is an appointment with a palliative care doc? Not because you want help dying - but because you want to live well without pain for many many more days to come. They many times have a different approach to pain relief.
Thinking of you all in the new year
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Kris and livebig have good advice. Since I realized MBC is really a chronic condition, along the lines of MS or diabetes, it’s really been easier for me to envision a good life ahead. Someone else told me she’s not fighting her cancer, she’s managing it. That also seems more do-able to me in the long term. Finally, it also helped me a ton when I learned palliative care has nothing to do with death, just in living in comfort.
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Thank you ladies so much. One of my colleagues just called me and thinks I need to find a counselor because my friends don't know how to help me. You are right. I am living with cancer. I am not dying. I have to keep that as my mantra. AND SCREW TUMOR MARKERS. No one has ever died from tumor markers.
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Absolutely Lisa! Get the professional help and try to get your pain under control. If you are in pain there is likely to be a knock on effect on your mood. Also remember that your oncologist was pleased with you. One day at a time. We all have bad days, we all get down. Tomorrow I may be the one on this board asking for help and solace so don’t feel guilty.
L x
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That's right Lisa! Time to kick some cancer A$$ and get on with living life! You are not alone with the down days - in fact, happy times (like holidays) are always harder for me like a punch in the gut. I say bring on boring ol Jan 2nd.
Keep us updated
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Hi Livebig,
Can relate to the pressure of holidays. I am kinda glad to be back to reality.
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Lisa, I was just coming on to echo the "living with cancer" sentiment. It is hard at first BUT when we think of it as living with it, it makes it easier to deal with treatment and more clearheaded to find ways to deal with SE like pain, GI issues etc.
I also encourage you to ask for a social worker to talk to as well. They can help reframe your thoughts about how family are dealing with it (or not dealing with it) and allow you to get more support elsewhere. I have an older brother whose family will drop everything if I need help with something. I have a younger brother who says go back to work since I do not appear sick. I decided the stress of trying to make him understand was actually a waste of time. I still love him and enjoy his company but cancer is something I choose not to educate him on unless he asks me something. It makes my life happier and easier. You need to focus on your health and not the education of your family IF they are not prepared to hear it. You have us to vent to, lots of supports I am sure through your cancer centre as well that will be better equipped. If your family wants to know something, of course share it but if they cannot acknowledge the cancer, decide if you need to cut them out OR have leave the cancer aside unless they ask. It is not a fair thing we sometimes must do, but our happiness needs to be at the top of our list and a person CANNOT make an unwilling person talk or acknowledge our reality.
I also encourage you to learn to hope for things. There is a lot of luck involved in how we respond to treatment but no reason not to hope for a decent future. I don't know how long I have, but I HOPE for a long time. Without any hope, life is very difficult.
I hope this has helped somewhat. These things are what helped me the most the past almost 3 years of being Stage IV. My best wishes to you.
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Lisa usually that combo is given with a few rounds of chemo. You haven’t filled out your history so maybe you have finished that chemo. It takes a bit of time to get use to the medications but they are life saving so who says you are dying? It really will get better with time in all areas! It’s scary for sure! On day at a time
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Lisa usually that combo is given with a few rounds of chemo. You haven't filled out your history so maybe you have finished that chemo. It takes a bit of time to get use to the medications but they are life saving so who says you are dying? It really will get better with time in all areas! It's scary for sure! One day at a time
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Mara-Thank you!!!!!
Bstein,
I had 5 rounds of taxatore, herceptin, perjeta. Now I am on just herceptin and perjeta and my markers already went up. My onc started me on tamoxifen.
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So my life has been a living hell. I am on zoloft now, for over two weeks but it has not kicked in. I am seeing a psychiatrist-but it hasn't helped much. I have horrible nightmares about cancer, and when I try to do "physical" things my lower back hurts, my legs feel weak, and I am shaky. I don't know if it my depression and anxiety or my cancer growing quickly. I won't do anything more than what I have to (work) and I isolate myself and lay in bed all day. I have given up-but I don't know if it is the depression making me give up or the cancer is everywhere. I see my oncologist tomorrow and get my herceptin and perjeta. He will draw my labs and I usually get my liver panel the following day. I pray, I know everyone is going to die someday-I, like all of us, am not ready. I still have an appetite-but don't want to eat so I have lost 10 pounds ( which I need to anyhow)-but this is not the way. My last scan was the end of November and showed partial response from the taxatore and herceptin and perjeta. Then I no longer get taxatore and my markers go up. He is not doing markers this visit because they freak me out so badly. Thanks for listening.
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Lisa, I wish I could pull you out of the darkness somehow
I don’t know your hormonal status but I will say that the lack of estrogen has huge effects on mind and body, much more than I ever gave it credit for. For me, it’s mostly joint pain and impatience, I find myself driving more aggressively and not even bothering to hide my contempt for lazy/stupid people (even at work). My point is that a lot of what you’re feeling could be body changes, not necessarily cancer growing. I hope you’re able to find something good and motivating soon.0 -
Hi, Lisa I can relate to what are you going through I had a hard time with depression and anxiety after my diagnosis, somedays I didn't want leave my bed. I decided to try Acunpunture for neuropathy (pain on right arm and hand kept me from sleep) and it helped me with depression/anxiety as well. After some friends advice I started practicing living in the moment, trying not to worry about the future and the things I might miss and this also helped with my anxiety. On my bad days I tap my shoulder and tell my self it is ok to feel however I feel , be gentle on your self. We are all cheering for you.
Last October found 20+ lesions on my brain (do not know how to add on my diagnostic description).
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Thank you.
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Hi all
I continue on HP. Another scan in March and I have no Evidence of disease in the mediastinum lymph node or anywhere else.
My doctor won’t be doing TMs again because they have always been at a very similar level and so he says it is unreliable.
I am in a great position as far as it is possible to be living with this disease. I’ve noticed a lower mood recently which I am attributing to lack of estrogen.
This thread is so long. I was wondering if folks who have been on HP for years could chime in and comment about how they are managing the rollercoaster that is MBC?
Liz x
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Liz, MBC is for sure a rollercoaster. My biggest coping mechanisms are daily long walks and I listen to relaxing music at night and breathe deeply till asleep. This helps with both mental and physical. I also have returned to a lot of hobbies I gave up on when I was dx'd in 2015. I also choose not to talk about my cancer with everyone. I made this choice because it was causing issues for me in the family, extra stress where I did not need it. I am happier talking about with my MO and everyone on my medical team and of course these boards.
The best advice I read earlier in another thread was to think of yourself living with cancer. In order to function and mentally justify the treatments, scans, SE, saying you are living with it versus terminally ill or dying of it frames it in a way to make it mentally easier day to day. Obviously, I know what will happen but I do not know when things may turn. I enjoy my QOL now and will hang onto it as long as possible. I keep hope that I last a long time and pray for the wisdom to know when it is time to stop treatment.
Lastly, if you are down one day, allow yourself to feel it, don't try to stuff it down. We all have dark days BUT with exercise, social workers, support from friends and family we can hope to go on for as long as possible. Don't let anyone tell you how long you will last, no one knows. We only need this if hospice is a better option and we can all hope that day is far away.
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Yup, exactly what Mara said! I have the same perspective and it works well
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I’ve definitely been frustrated lately due to joint soreness (letrozole) and more cording from my surgery. I’m feeling “old” (I’m 31) and hate that it hurts to play with my kids the way I would like to (piggyback rides and dance parties, lol), and even carrying them or snuggling can be uncomfortable. I’m hoping a return to PT will help. It helps to read the reassuring words from you all though and know that I’m not alone in this! <
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I was diagnosed with Stage 4 in December 2016, (first diagnosis was Stage 3 Triple positive in 2012) My recurrence in 2016 came with arm swelling and pain thought to be lympheda. Teated for lymphedema for a month with worsening sypmtoms, after re-evaluation was determined a lymph node tumor spread into my shoulder tissue and wrapped around nerves, in addition to 5 bone mets from neck to hip. Had 16 weeks of Taxol, with Herceptin, Perjeta and taking Letrozole. Taxol ended in April 2017, Pet scans in April and August showed significant reduction in mets and arm swelling went away. Now I have arm swelling and pain again! Just had a Pet scan and will get results this week. Just wondering how fast does Triple positive cancer return?
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Hi mlc,
There are many similarities with our situations.
Dx originally in 2011 IDC Her 2 positive and Er positive. Never sure on the progesterone status.
In Feb 2017 I presented with arm pain which initially I put down to a Lymphedema flare up. A CT scan showed a 2.9cm mass in my super mediastinum ( internal mammary LN ) Oligometastatic recurrent bc. The tumour has suppressed my left internal jugular vein where, hence the reason for lack of arm drainage.
4 THP and now on going maintenance with Lettozole.
NOV 2017 NEAD on PET scan.
This weekend my arm has been hurting again and I’m paranoid about a sticking out collarbone on right side- opposite to my cancer side.
I was clear recently and like you wondering what might be round the corner.
Liz
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just to add: the collarbone looks normal and equal when I shrug my shoulders.
I am hoping I have nothing to worry about.
The worry never ends!
Keep us posted.
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Jackboo09 - It is so hard to not be paranoid about everything. My arm is swollen too, and they have no idea why. I have not had any surgery or lymph node removal. They thought it was a blood clot, but ultrasound showed nothing. At that point, everyone has just forgotten about it. I keep on bringing it up, but they look at me funny and just kind of shrug their shoulders. They think it must be lymphedema. How can I have lymphedema if I have had no node removal or surgery of any kind? It is frustrating. I have no pain, however....so that is good.
Mic96 - Good luck on the scan results. Please keep us posted. I cannot answer your question about triple positive. I think everyone is different. I'm starting to wonder if this arm swelling is a SE of Herceptin/Perjeta???
MommyErin - Pain sucks, I know. I was so sore and stiff last night that I couldn't sleep. I was soo tired, but still couldn't sleep. I see that you are on Letrozol? Because you are 31 did you have your ovaries removed, or are you getting a Lupron shot??? What are they doing to put you into menopause?
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Kkrenz- Medically induced menopause for now (zoladex), but I’ll be having my ovaries removed probably in April.
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Hi Erin,
I too am on Zoladex but don’t relish an operation. What made you decide to have your ovaries removed?
I’ve just had a HP. Feel quite off it this time. Very tired and a bit sick!
L x
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is anyone here on Herceptin with Tykerb and letrozole ? I am starting Tykerb in February having failed with Ibrance and Faslodex. I’m read an article on this site that this is being used now.
I’ve had not side effECts from Herceptin. I’ve had 2 treatments. In 2006 I had 12 months of Herceptin.
So far I’ve had 2 pet scans this year. Bone mets only after recent brain MRI. No biopsy. Mets are small and scattered in spine, femur, sacrum.
I’m not sure the difference between Perjeta or Tykerb. Always lots of questions at each step,
Maire
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I have included two links to how each drug works since I have found these explanations a good way to explain the function and differences between the two drugs.
https://community.breastcancer.org/forum/8/topics/826737?page=59#idx_1769
http://www.breastcancer.org/treatment/targeted_therapies/perjeta/how_it_works
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