Why won't anyone respond to my post?
I posted yesterday about the hard time I am having with taxatore, perjeta, herceptin. Nobody responds. Can I be the only metastatic person dealing with this? I have no one to talk to. It is now in my liver. I have no quality of life.
Comments
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Lisajo,
I am so sorry for what you are going through. I am on a different protocol so unfortunately I don't know anything about your questions from the previous post-but know that I care and hope that things get better. I hope someone else will respond soon. I can offer you my prayers though-I pray that you will experience God's peace and healing during this difficult time. You are not alone and we are listening even if we have no answers.
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Hi Lisa,
I think the problem is you created two new threads. Many of the members have designated favourites and only follow those. As you can imagine, there is a lot of material on this site and so it's a bit challenging when new members start their ow threads instead of joining existing threads.
I would suggest you post on the Perjeta, Herceptin thread. I can't help as this is not a treatment I am familiar with.
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lisajo6 - I read your post, but have no experience with your treatment. I am Er,PR+her-. I wish I could help. How about if I listen? Tell me all your thoughts and feelings, that we all have in common! What does your mo say? Have you requested palliative care? They are great! Do you have support at home?
I may not have answers, but I will listen.
Hugs and prayers
Claudia
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Hi, Lisajo. I just now looked for and read your post from yesterday. Wow, it sounds like treatment is hitting you hard right now. There should be various meds to help with the mouth sores, bowel issues, etc; have you asked your oncologist or nurse? Don't think you just have to bear it; they may be able to help. As far as liver mets, it is possible to have more years with good quality of life. Come join us on the liver mets thread. If you don't feel positive right now, don't berate yourself. Things can get better and you are not alone.
"How are people with liver mets doing?" thread
https://community.breastcancer.org/forum/8/topics/...
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If you are having a rough time on your treatment, please consider looking into Palliative Care.
Palliative care is meant to help anyone with a serious illness by maximizing their comfort level as much as possible. It differs from hospice care in that the patient does not need to be near end of life, and they can continue to receive standard treatment while on palliative care.Patients can request it at any age and any stage of an illness (even upon diagnosis), and it can be used along with curative treatment.Palliative care is not dependent on prognosis.With palliative care, patients can expect to have more control over their care, along with a comfortable and supportive atmosphere that reduces anxiety and stress.The patient's condition and situation are reviewed regularly by their palliative care team, and they are discussed with the patient to make sure that the patient's needs and wishes are being met and that treatments are in line with the patient's goals.
Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.It addresses the whole person and helps them to carry on with daily life.It can improve one's ability to go through medical treatments and help the patient to better understand their condition and choices for medical care. In short, it enhances the patient's Quality Of Life (QOL).
Therefore, patients may wish to start palliative care early for best results, and they should request it from their doctor instead of waiting for their medical team to bring it up.
Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment.Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home.Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the patient's doctor.Massage therapists, pharmacists, nutritionists and others might also be part of the team.To obtain palliative care in order to manage cancer or treatment side effects, the patient should speak with her or his doctor or nurse. Alternatively, patients can look up Palliative Care providers in their area at: http://getpalliativecare.org/providers/
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You might also check out the her2+ thread since your chemo regime is for someone with her2+. More of us are her2-. Here's the link.
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hi,
I suggest you check out older threads, which pop up on even google when searching, as older threads talk more.
All is new. Please do visit a psychiatrist to have mood & anxiety meds you definitely need prescribed. MBC 101
It takes a bit time for newbies to blend in.. been there.
Hugs
Ebr
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lisajo6: I am getting ready to start taxatere, perjeta, herceptin. I will look for your other posts and hope we can compare notes. Without knowing your details, I would generally say I second the suggestions made above: I have already been referred to palliative care and want to take advantage of pain/discomfort relief options. So far, mood support is not part of my care plan - but I know many people for whom it is. You probably would not ignore your blood pressure if it were out of normal ranges and needed treatment. Mood should be the same way! Take care of it and yourself. I was just reading new research about how mood/depression/anxiety may be impacted impacted by inflammation. Many of us have widespread inflammation as a result of Tx. That and other circumstances surrounding our Dx and Tx put us at risk. Allow yourself some extra TLC.
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