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Re: My Husband, My Life, My Love, My Family, My Cancer
@irishlove That is good news about your grant. So happy. I had an incorrect dx of diabetis in my chart too, but a new PCP noticed, said I didn't have it anymore due to current labs, and removed it. She figured it was because I was on steroids for a period of time which causes temporary diabetis. Could that have happened to you? Just a thought.
@shanagirl Also happy to read your spinal ablation worked and you are pain free from that.
I have a scan on Tuesday, otherwise just trying to get over this cold. Praying for others as I read through.
Re: My Husband, My Life, My Love, My Family, My Cancer
GoodMorning Dearies on this gloomy Sunday Morning. We’re expecting stormy rainy weather, I feel it in my bones. So Any way Happy Sunday to you all Dear ones.
@mara51506 , stay warm with your expected snow . And I have no doubt you will be cooking so enjoy the day, eat and watch some movies🥰
@irishlove I’m so happy for you that you about your grant. As Mets patients we really need our records to be correct.. I always find myself combing through my records on MYChart and trying to analyze everything.🧐
@Chicagoan I’m thinking of you today.🌷🩵. @mkestrel You too are always on my mind. I hop all is straightened out with your medical records. I went through this one time with my records with a horrible gyno woman I called her out on her records and she never said anything she just dropped me as a patient due to some insurance issue she claimed I am not covered for… it was a blessing in disguise. I am sending love to @threetree @goldensrbest @candy-678 @cookie54 @micmel @eleanora @intolight @illimae @everyone else I chat with on the bone Mets forum and fasoldex girls forum and all of you dear girls. as well as any men who post on thos forums.
tomorrow morning I am meeting with RO to get my tattoo so I can start Palliative radiation for my hip groin low back pain all related to a Vestabulum lesion that is the cause of my walking pain and limping. I pray it works.. and then Next Thursday I have a follow-up with the Neurological Surgeon from the spine Brain Institute, wh did the RadioFrequency Ablation on the 8 facets in my cervical spine. I’ve been pretty much pain free as far as that is concerned, PT is also helping with my neck healing too.🩵
Re: My Husband, My Life, My Love, My Family, My Cancer
@irishlove thank you for the kind thoughts. Congrats on getting assistance with your medicine. About the error in your chart, you have every right to ask for it to be corrected. That can carry over into all of your other charts because they just copy and paste. I was a medical transcriptionist, and I was constantly audited on my work for every tiny typo. Now I see errors all over my charts and it drives me nuts. They are just using speech recognition and leaving all the errors, putting a disclaimer at the bottom that this is AI.
mkestrel
Long term benefits vs awful short term sacrifices
Hello all
Lumpectomy Oct 21, post op meeting with surgeon, she said"pathology looks good, got the tumor, nothing in the lymph nodes, treatment remains radiation
A week later, met with the MO who blindsided me with my high oncotype score(31), and recommended chemo.
The idea of going through LBC/risk of infection, hair loss, nausea, neuropathy, and later brain fog from chemo only to drop the chances from 31% to 15% is just not very reassuring!
Anyone want to share their decision making or what they did to convince themselves that the short term awfulness is outweighed by the long term peace of mind?
yogagoat
Re: My Husband, My Life, My Love, My Family, My Cancer
Good early morning everyone. @mkestrel I had to go back and read some posts that I had missed and I was so shocked to read of your progression. In your pocket and prayers that they can get the liver mets under control now! I may have missed another lovely lady that scanned and they found progression, I apologize if I did. Do you ever get one of those eye headaches? It feels like a stabbing effect in the eye. I usually blame MS but this one is a whopper. I've been off Ibrance since Oct. 6th. MO appt. Monday. Hope to get back on it then. The neurologist depends on the Ibrance to help keep MS under control. No Ibrance, MS is running amok.
Been smiling and trying to figure who my angel might be regarding the grant money. I applied for a grant from Pfizer every year and that was hell on earth to obtain. But no one else. Perhaps the financial lady, as we spoke about the ridiculous copay for Xgeva and we schedule the shot around Soc. Sec. time. Or maybe sweet Dr. C., my MO. He listens and I must say something a bit out there, but when you find a Doctor that you are in sync with, regardless of his specialty, you want to hang on to him or her. So forgive me if this offends anyone, but I'm hoping to keep him till death I do part. It's kinda like marriage vows, instead it's medical vows and there's a certain peace in knowing he'll be with me thru this journey. Can you tell I don't like change? Must be why I'm married to DH for 46 plus years.
Sure could use a suggestion on how to remove incorrect diagnosis on my medical chart. It states I have Type 2 diabetes and that the doctor went over my meds and the importance of yada yada yada. Ok, so I don't have Diabetes Period. I called Primary and also sent a message thru the portal. That got me nowhere. Office Manager said I'd have to track down who put that info in my chart. I said well my current PA must have due to the date and oh yeah, his name is alongside of it. I was in his office that day. She informed me that means nothing. Now what do I do?? This could lead to very serious consequences if I am unable to provide medical input whilst in the hospital. Besides, my blood boils that such errors occur and hit a stone wall. I won't give up, even if it means obtaining a lawyer (hope for pro bono).
In pockets for all my sweet, dear friends as we keep supporting each other thru this journey no one wants to take.
Laurel
Re: My Husband, My Life, My Love, My Family, My Cancer
@goldensrbest We are due for some snow on Sunday, our ground is still warm as well. That is fine. I still remember one year when we went out to a pizza place called Fluffy's on my birthday. Ground was clear and dry, when done it was a snowstorm. I thought that was great.
@eleanora Yeah, medical studies can be plain wrong, with my inflammatory breastcancer, I was supposed to be a goner after about 2 years but here I am 10 years on, 9 years post brain mets on. Not sure what will be done with the current cyst but honestly not worried about it now.
Today has no scheduled activity beyond taking a picture of my disability slip along with ambulance bill. As I am on disability, we don't pay for the ride but apparently after one year that runs out and you have to resubmit. No big deal.
I do like the wee hangup drier, does what it is supposed, can put clothing in there easily as well. I do want to get more laundry done today and put recycling into some blue bags, store outside til garbage day.
Got a grocery order coming, 3 queso meals, 3 penne meals as well, will make larger meals by heating up both, got chicken fried rice too. Also got the 4 tubes of ground chicken. 10 bucks for four and they are lean ground chicken as well. Can do a lot with the ground chicken. Bag of doritos and some chocolate almond bars. Expensive order but will not require a shop for a while so no matter to me.
I hope all have a good day and in pockets for all as well.
Re: My Husband, My Life, My Love, My Family, My Cancer
Irish - 🎉🎉🎉for grant $$$. What a blessing. We have seen Neil Diamond several times. There is a Broadway show making the rounds about Neil Diamond. Our kids got us tickets to see it locally and if you closed your eyes you would swear it was Neil himself singing. So many artists I wish I could have seen …. John Denver, Queen, The Carpenters to name a few.
Mara - sorry it is taking so long to get appointments. Hopefully things will fall into place quickly.
Stay warm everyone - supposed to be a cold weekend with some snow being forecast. I don’t think it will even stick as the ground is too warm. Hugs to all🤗🤗🤗
Re: No information provided about late effects of radiation before treatment
Thank you for your response. I feel bad when I hear about people who have been much more seriously affected. My complications seem relatively minor. My problem is that I have no margin to cope with additional problems because of other concerns I have to deal with. As hard as I tried to make the oncologists understand that and take it into consideration in my treatment, they were all confident that I would "tolerate treatment well." I will take into consideration your suggestion that I contact the radiation oncologist. My problem is that I no longer have confidence in them.
mgradie
Re: My Husband, My Life, My Love, My Family, My Cancer
@chicagoan Yes, my MO has repeated pointed out to residents looking in on me that I am a miracle. One thing that helps me is a fast growing cancer responds well to chemotherapy and that is largely why I have not spread anywhere other than my brain. I tell you, when I was first dx with it and checking on here and dr Google, I was sure I was dead meat, then spread to my brain and again thought dead meat. My poor Mother who was as anxiety ridden as me heard me say I'm going to die but I have not. I do not believe this cyst will be the end either. No symptoms as of yet, waiting to hear about my referral to the neurosurgeon.
Re: Looking for others with low risk, less than 2cm, IDC stage 1 grade 1HR+ HER2- on endocrine therapy
Reporting back in a few months later to follow up on how exemesthane worked for me!
My oncologist at Fred Hutch assured me that among aromatase inhibitors, exemesthane was the best—the most effective with the least side effects. I went into my trial of exemesthane with great hopes for success and a good deal of optimism.
I also went in with open eyes and an understanding of what side effects to look out for. Sadly, they hit me like a wall. I started the drug in early July and stopped cold August 9. I took the full daily dose, and my oncologist determined, given my side effects, that any smaller dose would be just as detrimental. It is said that the third AI one takes is meant to be most tolerable, but I think this is because by the third prescription you are already so devoid of estogen you don’t feel the side effects so much? I am 50 and experienced menopause somewhere between 48 and 49. Apparently being newly post-menopausal can also influence the severity of effects. And wow, am I the poster child for side effects!
My side effects included neuropathy (lack of feeling and pins and needles) in my hands (which is rare) and thinning skin within the first week (I kept skinning my knuckles doing routine, soft chores like folding the laundry). I also had a persistent runny nose, fatigue, and the start of depression. I developed hand pain every evening, with trigger fingers each morning. My hands were swollen so much I felt I could not hold a pencil or a steering wheel, and the the trigger fingers were very uncomfortable. This would wear off during the day, mostly with a hot shower. I started bruising easily. Night sweats and hot flashes during the day returned, though not as bad as with Tamoxifen. Insomnia, diarrhea, and an aching left ovary combined with a general weakness in my hands and hip pain followed. My jaw began to pop, something that it had never done before. I contracted angular chelitis, a fungal infection of the lips sometimes associated with cancer treatments. I suppose due to low white blood cell counts. This traveled to my ear lobe before I got it under control with OTC fungal lotion. Painful but not noticeable or catching for others, thankfully. Never had it before in my life. I was also becoming quite anxious about bone loss given that I was experiencing so many side effects. Not all of us have bone loss on AIs, but with my osteopenia, I was worried. And anxious that for 10-20% of women, bisphosphonate injuections fail to rebuild bone. To add insult to injury, I thought I had contracted a UTI, which is common on AIs, but it turned out to be a phantom one with no infection. It is OCtober 16 and I still am having this side effect. I have a referral to a urogynecologist, as my oncologist couldn’t quite address the odd symptoms I was experiencing (which I only feel on my left side, for some odd reason). It is a constant urgency in the pee department that, at its peak a few weeks ago, was near incontinence. I have been managing it with NSAID over the counter drugs as needed. As of today, everything but the hands and phantom UTI have cleared up. I am getting compression sleeves for the day and braces for the nights to see if I can’t help alleviate these symptoms. My oncologist believes this will clear up. In some cases, damage like this can be permanent or result in the need for trigger finger or carpal tunnel surgery.
So, I did stop the drug and am now not on any cancer prevention anti-estrogen drugs. I can still elect to try a new AI should I choose, but so far the impacts on my quality of life have been extreme considering I have a 8-12% chance of recurrence in the next 9 years. I do understand that recurrence rates go up as we age, but we are learning more and more about that with precision oncology. But I also bear the weight that in oncology, even 1% is significant.
DO NOT STOP TAKING YOUR MEDICATION without telling your oncologist. This is not an endorsement for anyone to discontinue care. I had to weigh the potential damages to my body against a low risk of recurrence. Your risks are different to mine, no matter how similar we may be on paper. But DO TELL YOUR ONCOLOGIST if you suspect any new thing you are experiencing to be a side effect of your medication. Your situation may be that it is fine to risk the need for hand surgery (which can be very simple and routine) against cancer recurrence! I simply did not feel it was right for me. I was disappointed my oncologist didn’t offer more support for prolonging my anti-cancer medication. Perhaps it is because of the multitude of side effects I had that made her pause. The oncologist-heamatologist I saw for a telehealth visit within the practice of my regular medical oncologist did not think it would be advisable for me to try a lower dose or really to ever take exemesthane again. She did, however, give me a letrozole prescription, should I choose to try another AI. At the moment, that sounds too much to bear, given that even months later the sidwe effects from July still cause me daily pain and discomfort. We are fighting cancer here, but quality of life also matters.
I am about to start a PhD at 50 that will span global hemispheres. I have a low risk of recurrence, despite the numbers adding up over time. I also am stying abreast of technology and medicine that is evolving. Liquid biopsy may, in a few short years, be able to help us know better which of us are at risk of recurrence, which for hormone positive cancer is still a mystery. I will continue to get my mammograms, scans, and ultrasounds, as well as my physical exams. And I will exercise and take care with my diet and minimize my alcohol intake. I am deeply disappointed I was unable to tolerate exemesthane and tamoxifen. I envy those of you who find it tolerable.
I continue to urge you to find oncologists who understand you and work with you. Mine is good but not as helpful or encouraging as I would like, but I stay with this one as her staff are very useful and her clinic on time and state-of-the-art. Just once I would like to have an oncologist look me in the eye and say: “Your case is low-risk. Here are your options. This is what I would do.” Ironically, the very first oncologist I saw just as I was moving away from the city he practiced in was the most helpful that way. He said I most likely got this cancer because menopause caused my estrogen to spike trying to get my ovaries to release the eggs that were not there. This is conjuncture. But it helps frame the disease for me. I have no genetic or lifestyle factors that predispose me to breast cancer that we know (and correlation isn’t causation, so don’t be fooled!). He said I’d be fine. U’d have surgery and take some pills, and I’d be good. He as a very kind man. I hope he was right. He seemed very assured this was going to be the case. Make sure your oncologist is there for your whole person. You are one of a kind, and deserve the best care, no matter your diagnosis. That matters at the end of the day. You need to feel human and respected after you've been to to doctor. Make sure you get that experience. And do something nice for yourself today. Get off this site and go be alive!
kitty75