Bone Mets Thread
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spiced - good job going to a specialist on the depression. you are doing really well figuring out what strings are important to pull and pulling them...
>Z<
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Spicedlife. I’m so glad to hear you are getting a plan together to help with depression. Sure reading inserts is scary but it’s important to be informed so you can advocate for yourself. I used to get scans and bloodwork from staff and then hospital policy decreed I had to request it in person in records dept. Now all blood work is on patient site but I still have to request other scans etc in person with ID. They mail printouts to me.
You are doing great. I want to say breathe but most of all trust your instincts about how you feel. Doctors are there to help you not make you feel upset or inadequate. Hang in there.
Has anyone heard from Leapfrog. I notice she hasn’t been posting.
Take care all. Hope all of you in the northeast US are staying warm. It’s definitely “ cabin fever weather”
Thinking of you Lita. Z a little Chianti sounds good. You woman are amazing and lift our spirits
Maire
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as of yesterday I am on medical leave. I applied for short term disability and when it ends I intend to go on ss disability. I’m completely at peace with my decision. Just keeping fingers crossed that the STD comes through.
My lab work is always good. My tumor markers are non-existent. If I hadn’t felt the lymph node and went straight to doctor I’d never know I have Mets. How will I know when it progresses? Hopeful my treatment keeps it stable for a long time. I’m just curious.
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swess-Now you can breathe and get some rest! I cannot imagine that the short term disabilty would not be approved.
Progression? My MO uses 3 things to determine in this order 1) How am I feeling(symptoms) 2) scan results and 3) tumor markers
You will have scans done. The interval between will depend on the factors above, and what your MO does traditionally. Remind me what you are being treated with? Here's to long term stability!
May the force be with you-MJH
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Swess,
Yay! Go for it. I have been on short-term disability for six months and my onc asked me if I had long-term disability coverage. If she hadn't asked me that question, I would have never even considered it. I will hear next week if I'm approved for long-term, and my onc has assured me I will be approved (guess this is not her first rodeo!). Anyway, I am now filling my days with a women's Bible study, art classes, and cooking classes, things I have always wanted to do, but was too busy with work to consider before now.
I have also found my stress levels go down as a result, and can now find time to read everything I can about nutrition, etc., to boost my immune system. I need to lose weight and start an exercise routine, all things that I now have time for. I hope you can also get long term disability or SS disability. Take care
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thanks guys. It’s weird how much relief I have felt in just two days. I’m on Kisqali for 21 days, off for 7; aromasin every day; monthly xgeva and b-12 shots.
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Swess (and everyone) - Join us on the Stage IV Fitness thread and we'll keep you busy in ways that will support your healing.
>Z<
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I'm really worried about Patty Peppermint. The last time she posted anywhere was mid Sept, more than 3 1/2 months ago.
I'm fearing the worst since she doesn't have anyone to post for her on her behalf.
If anyone knows anything, please let us know.
L
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Maire, I'm thinking about Leapfrog, too. Hopefully she's too busy enjoying food and wine at the local café to check in.
Swess and Boo, so glad to hear your disability success stories. I too took the plunge and was approved for SSDI, hopefully I'll see that first payment in the next few days. The 5 month waiting period is so unfair. I'm ok, but my heart aches for women dealing with the realities of the disease, trying to make ends meet, and facing medical expenses.
Regarding progression, echoing MJH, my MO goes by how her patients are feeling and scans. She's not a fan of TM's and mine have never been reliable. Once you settle in to your treatment hopefully you'll have months and months of good scans.
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There was an update posted to Patty thread a few minutes ago. Patty has a very bad infection and has been in isolation in the hospital since right after Christmas. The doctors have been unable to find the source of the infection. I am praying for Patty and her family.
Lynne
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Sorry to hear that Patty’s in the hospital. Sending positive thoughts and lots of prayers her way!
Babs
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Lynne, thanks so much posting the update on Patty, so sorry to read it though. Will be thinking of her and hoping for the best.
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Lynne thanks so much for updating us! Have been very concerned about her not posting. Hoping and praying they get that infection under control!!
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Gracie - I was just thinking of you. How is Ibrance treating you?
>Z<
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Hi everybody,
I haven't been on here in a while. I caught up on a year and a half of reading yesterday. Saw familiar names and new ones too. I love this forum even though I can't stand why we are all here.
I've been absorbing my DX. I've been fortunate that the Tamoxifen has had no real SE's except for weight gain...but I'll take a few extra pounds, you know? The Zometa has been OK too. I haven't had any real SE's from that except for the first time - flu-like symptoms. My next PET is in March. According to my MO, my TM's are so low that she recommends annual scans.
In reading some of the other posts, I see everyone says the same. ...every pain I have I think the worst. I chose not to have reconstructive surgery - I'm a chicken with pain and heard it's super painful. The prosthetic I have weighs a lot and it was causing me muscle pain in my neck. I've stopped wearing it, but my neck still hurts. My MO says it's normal and that my body will adjust. Does anyone know about that can help get rid of it quicker?
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Lynne,
Thanks so much for the update on Patty. I will continue to pray for her.
L
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Silviah, I too did not have recon and have found wearing a swim prosthetic to be a very light option that also gives a little bounce and suppleness. It also is cool. The brand I have is Anita. Glad to hear you are doing so well.
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Silviah, have you tried regular sessions of acupuncture or therapeutic massage? I haven't had recon either and I think Jens idea of the swimming prosthetic may be the thing to try once you get your neck back to normal.
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Z, so far I’m good! Have had a bug for a few days, but other than feeling stuffed at trying to eat a full meal with Ibrance that includes fat (feel like a glutton!) I’m doing pretty good on it. Thanks for asking! How was the pasta? Did you or have you drank Italia dry yet? 😉🍷
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Ladies ... I posted this in the Medical Marijuana thread, but it doesn't seem to be very active. So my question is ...have any of you had an issue with getting your MO to sign the forms necessary to get your card for medical marijuana? I am looking for something to help me sleep. Pain is now under control and limited side effects with treatment. But do not want to keep taking sleeping pills. Haven't approached my MO yet, but was wondering if they are usually agreeable.
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baywitch, I haven't personally used MM yet, but your question made me think of an article I'd read in CURE Magazine, and I thought I'd give you the link. After I'd read it, I asked my onc what she thought of MM, and her comment was, not enough research yet to support RX'ing it, but that she has plenty of patients using it. Hopefully, your onc will be open to it.
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baywitch, my MO will not prescribe it, so I went to local guy known for giving medical mj cards. Just said the word ‘cancer’, and I wasgood as gold.
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Thanks for the replies. I am seeing her on Thursday and will bring it up (along with the article). If no dice, I am not adverse to going a different route, like finding one who will. - Kathy
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A cancer diagnosis will support an MM card, period. Most dispensaries have an on-site practitioner who will prescribe. I would not bother with an MO for anything palliative or complementary. They have no training at all.
>Z<
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My Mo is unable to prescribe or recommend someone who can due to legalities. I went to a Vape store for CBD oil and they gave me a name and number of a doctor who can, and will write scripts. Still unbelievably hard to find Drs and dispensaries in Florida!
Claudia
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Drs are licensed by state and fed, so many wont approve it because of the federal laws. I went to a "green" clinic, and brought my dx from when i signed up for SSDI, and i got my card in 10 mins. You may need to go to to someone else besides your mo.
L
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I looked up a Care Clinic in my area and it appears they will prescribe after requesting my records from my doctor. I will check further, but would almost rather she was not involved at all. While I love working with her, she does not seem to be open to those types of alternate therapies. -Kathy
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Requesting medical records confirms your diagnosis without involving your doctor. It goes to medical records, not the doctor and she will never know. It's a formality. That said, you can request the medical records yourself and bring them over to the Care Center. You should have a copy.
>Z<
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Z -- thanks! That is the route I will take. - Kathy
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Hi All, looking for a group that I might fit into. it's been 30 years of having some type of cancer-since 1987 Non-Hodgkins Lymphoma. And while I felt that dealing with breast cancer was a 'walk int he park" in comparison (only) dealing with a Stage 4 Bone mets kinda hit me in a very different place. There was always hope before--even when they gave me 6 months to live, I still believed I would make it through and return to some normalcy. It is just about 3 years into this Stage 4 dx and I am still here...wondering alot of things. I feel very much alone despite having a spouse and son. I am active as much as I can be but want to be more--feel that every hospital stay is like climbing an uphill battle back... at any rate, I thought I would post and say HI,
Q.
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