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My 61 year old sister has it. She'd had a partial hysterectomy in her early 40's after a fibroid had grown too large. Her present cancer is Estrogen driven, and genetic testing was negative. She'd been stable for 5 years via hormone suppresant drugs with little side effects. Amazed the doctors. The last hormonal, aromicin, given in June, failed to deliver. She already had it in her bones, with spots on the liver and in her lung. Spots on her ovaries disappeared with the treatments. Now, with the last treatment failure, it's in her liver, bone marrow in addition to the bones. She had a chemo TX 3 weeks ago, but due to extremely low platlets and white blood count, they were only able to give her half of 2 out of the three drugs (TAC??). She had a transfusion yesterday, which helped the horrible fatigue, and is preparing for chemo again next week. Actually doing "better." I give her regular Reiki treatments. She's being treated at Yale.
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Hi Marilyn - I'm exploring clinical trials for myself, and also just worked with the Leukemia Society and Mayo Clinic to present a day long conference on cancer clinical trials. Yes, there is a chance of placebo but it is less likely than in other trials and they will stop trials if there are indications that the patient is being harmed. I have personally met people who were told there were no more options who are living today because they were in clinical trials - it has been eye-opening.
I have something for you too, a link from the National Cancer Institute with tips on caring for the caregiver. http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver
Thank you for your prayers, and please let me know if I can help you with anything else down the road. Pat
November 7, 2010 - 6:48pmThis Comment
Hi Pat!
November 16, 2010 - 4:30pmWell, for the second week in a row, her platelets dropped. They're down to 21,000. They were unable to give her chemo, and now she's being sent to a hematologist. She actually was feeling good this past weekend, stronger since a transfusion helped with the severe anemia she has. I wish I knew the course of this. I have one other sister to share this journey, and she's on call for my sister who has cancer, as well as my mom, who, thankfully, is in a rest home at the age of 92. How long does someone hang on with this? She looks great, but how long can this last? I'm scared to death for her.
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Hi Marilyn - I'm sorry to hear of this development, and understand your fears. It is really difficult to tell you from this end how long your sister will have because I don't have the full medical picture, and, of course, I'm not an oncologist. I really think you need to have a heart to heart talk with her primary oncologist and find out what her options are and get the doctor's thoughts on how much more treatment she is going to be able to withstand. I know these discussions aren't easy, but neither is being in the dark, and you seem like someone who would want to make the most of every moment that your sister has left.
Another reason to step forward and have the "talk" is so that you can have a voice in future decisions and help your sister make them. There is a branch of medicine you may not have heard of - Palliative Care - that might be a good option for her down the road. It comes into play at the end of life, but can start sooner. The goal is to make the patient's quality of life the best possible. This link has some good information and resources: http://www.nlm.nih.gov/medlineplus/palliativecare.html
In talking with patients, reading their blogs and working with families, I have consistently found that a key factor in how patients deal with their cancer, treatment and all that comes with it, is their own attitude and their sense of whether or not they have support from others. Perhaps if you put more focus on the quality of her time, and her comfort, it will help everyone, including your sister on a day-to-day basis, and lessen your fears too. I suspect you have a lot of pent up energy and want to do something to help. Let me know what you think of this idea or if you'd like information on more resources.
November 16, 2010 - 5:31pmTake care,
Pat
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Thanks for your reply! As usual, you were prompt and so helpful! Your sensitivity comes through loud and clear, Pat.
My sister is a strong lady, both physically and mentally. I'm a therapist, believe it or not, and my sister and I have a history of closeness. So we do talk pretty openly, but I refrain from asking to speak to her MD. I pretty much follow her lead, which is governed by her own educated choices,good sense, the opinions of her husband and adult children. She still has a great deal of hope, it seems. But she remains informed and realistic, too. She's careful to educate us about her process in all of this; that she's been dealing with this for 5 years already, and knows what's in store. Her doctors have explained the importance of keeping her "comfortable" and have acted on it already. I visit her and help out regularly by spending time doing chores, cooking, and giving her Reiki (I'm a level 2 practitioner), which really seems to help with her discomfort. She's on pain killing drugs which really have improved the quality of her life. I admire her courage! I think what you hear in my posts is a kind of pre-grieving. I know this is eventually going to take her from me, and being the control freak I am, I want to know as much as possible. I've spoken to folks from the National Cancer Institute, and they sent me a huge bundle of stuff based upon what I've told you and them. I had to put it aside, as it dealt with palliative care/end of life issues and such. I just couldn't bear the thought of opening that stuff and reading about it as it relates to MY sister, MY life. I sound like an egomaniac right now, but believe me, I talk to next to noone about these feelings. What rights do I have to speak or give an opinion when her husband, children and mother are also dealing with a potentially catastrophic loss? So here I sit, sending messages to a sweet, caring, knowledgeable person on line. Her name is Pat. I thank you so much for this!!!
Marilyn
November 16, 2010 - 7:11pmThis Comment
Hi Marilyn - No, you don't sound like an egomaniac. You sound like a caring human being who lives in a society that does not openly discuss serious medical illness or death. It is a very lonely place to be, and it's sad to me that we live in a country that puts so much focus on youth that the needs and lives of people past the "marketable" age are pretty much ignored. They're hard to find but if you can locate a caregiver's group it might be helpful. I'm thinking you're already going through a grieving process as the sister you knew pre-diagnosis is gone forever and won't return.
What right do you have to speak? Well, I don't now your full situation but I can tell you that my good friend whose husband has terminal cancer is in pain because friends and family stopped speaking, calling, emailing, etc and just ignore him and her. She would much rather know that people care and are there for them. I know it's hard but I suggest a heart to heart with others, who may also be feeling just like you and not knowing what to do and wishing for heart to heart talks too. And, as always, be sure to take care of you as you can't be helpful to others if your own health has been compromised. Stay in touch! Pat
November 17, 2010 - 9:15amThis Comment
I'll heed your advice, Pat!
Heartfelt thanks!
Marilyn
November 17, 2010 - 6:41pmThis Comment
Pat,
You're a doll. Thank you for your prompt, sensitive and frank reply. Deep down, we know what's in store but we're all hoping that a miracle will happen; that we'll wake up and this will all be a bad dream. Clinical trials are an option, but what if she doesn't get the treatment they're testing. A placebo scares me more than the chemo. It's hopefull to think that they are DOING something, you know? It somehow gives us hope.
But I imagine it's worth it to ask.
And yes, it's hard on the caregivers, the ones who love her, but we have to put our needs on the back burner, at least on those days that she 's so sick that she needs us. There's really nothing like having a supportive sister.
Thank you so much. I'll keep YOU in my prayers.
Marilyn
November 7, 2010 - 6:28pmThis Comment
Hi Bellows - Thanks for writing and seeking support for your sister. I'm sure this has to be a difficult time for your entire family and that you want the best for your sister. Unfortunately, as I'm sure you know, Stage IV is the most advanced stage of breast cancer because the cancer has spread to other parts of her body. The doctors must believe the next round of chemotherapy will help her, but you (or she) will need to ask them directly to tell you the best and worst outcomes they expect. Her oncologist will know this information but most wait until they are asked directly before providing it, especially in late stage cancer.
In terms of her treatment you may want to also ask if there are any clinical trials that might be beneficial. The reality of cancer treatment is that it can take 8 -10 years for new treatments to be approved by the FDA, and cancer treatments are approved at an accelerated pace so they go through the process faster than other drugs. For some types of cancer the best option will be the new treatments that are only available through a clinical trial. Since Yale is a teaching hospital the doctors there should be familiar with current clinical trials and be able to assist in evaluating whether they could be some options for your sister in taking that route. You can also find more information here: http://clinicaltrials.gov/
I hope this information helps you. I'm a breast cancer survivor and a leukemia patient in treatment and know the worry, fear and frustrations that come with a cancer diagnosis. Please take good care of yourself as you go through the process of helping your sister. Pat
November 7, 2010 - 5:27pmThis Comment