BC & Autoimmune Diseases: How many? What does the research say?
Comments
-
Thank you all for the advise and support. I plan on seeing the rheumatologist next Monday and listen to what he has to say. I have a list of questions ready for him. Then I plan on calling the MO back to request an appt IF I still have concerns. I have a separate list of questions for the MO. I was reading them aloud today (I live alone and sometimes saying something aloud forces me to hear what it would sound like to someone else). I don't think my questions are crazy and I don't think I sound like a hypochondriac. Some sample questions are, has my MO treated someone with metastatic cancer and this Syndrome before ( does she have experience with it). Are there any contraindications of using the medication the rheumatologist advises for treating the Syndrome and my current treatments OR future treatments for the cancer. What blood thinner is best for patient with liver mets. What about my current hormone therapy treatment. See,knowledgeable,well thought out questions. And questions I think should be directed to the onc specifically. My oncs office makes me feel like I am being a hypochondriac and bothering them when I call them. I think I need to face the MO and let her know I am feeling this way. I have gotten to the point of fearing, yes fearing, calling my onc because of their attitude. What if I am really sick? I hate this. I wish I had a better relationship with my onc. Any suggestions??? I too have minimal options for another doc.
0 -
Spoonie, I had no way of knowing any of that. I'd love to know how you manage long doctor's appointments. How do you sit on those incredibly uncomfortable chairs in the waiting room for long periods? I end up in so much pain, I just want to leave. Then, how do you sit in the same uncomfortable chairs in the exam room waiting for the doctor and then asking all the questions you want? I end up in so much pain, I can't even think. Do you ask them to bring in another chair? I've been tempted. I went to my MO yesterday. I may calm down by tomorrow. I should stay off of BCO that day and the day after. I am not in a good state to post. I really appreciated your posts on the Tam Road thread. Yeah, runor is my hommie.
0 -
JayCee - Sorry, it appears I misunderstood your earlier post, I tend to get a bit protective of myself when someone says I'm lucky about xy or z...lol....what seems lucky to some is not to others. You obviously had no way of knowing any of that. I'd trade my circumstances for a "normal" life most days of the week. No harm no foul, my friend. I'm glad I could be helpful on the Tam Road thread.
Runor is good peeps, I agree. As to how do I deal with the long dr appts? IDK really. Sometimes I ask to lie down while I wait, in a quiet room so I can skip the chaos of waiting rooms which aggravate my symptoms. That helps. Also, often I will lie down until the dr comes in the room too. And yep at times I have asked for a different chair on occasion or to have less light in the room or cooler, as my symptoms are worsened with heat and bright lights. Usually my adrenaline is running high while talking with my drs so I sort of forget about all the pain for awhile, until after the adrenaline subsides on the way home. That's when I crash, physically. It sounds like your MO appt didn't go well? I'm very sorry about that. If you want to share, I'm sure we would all listen and let you vent out the frustrations, fears, or whatnot. Here's hoping tomorrow is a better day for you. I try to remind myself of things like that on crap days....even if today is awful and I don't have the strength right now to see years down the road, I do know that tomorrow is another chance at a better day. Sometimes it works. Sometimes not. Hang in there.Candy - Those all sound like reasonable and IMPORTANT questions. A list is a good idea. I tend to forget everything during an appt if it's not on my list. I also think talking to your MO about how you are feeling (ie hypochondriac due to attitude by staff, responses to questions) might be helpful if done in careful way. She/he can't fix the problem if they do not know that one exists. I'll be pulling for you and hoping you get the answers you need to set your mind more at ease.
0 -
Hi Candy,
I’m curious....when you look back were there any warning signs before your TIA? Like weird headaches, headpains, jaw pain, vision change. Anything?
0 -
Marijen- No nothing. I was getting ready for work one morning. Usual morning routine. I turned to put breakfast dishes away and my vision went screwy for less than a minute and then my left cheek felt numb and tingly. The vision change was less than a minute, but the face numbness lasted most of that day. Wait..... I do remember that facial numbness feeling before but milder. But never the vision issue. And a couple of months before I had a weird episode of mild confusion at work--end of day and lasted about an hour. I thought it was tiredness. Typing this out I do remember those other times. I didn't tell docs about them. Thanks Marijen. You made me think more about it.
0 -
I just want to chime in that my oncologist and rheumatologist spoke on the phone, and then to me, about my treatment when I was diagnosed. I'm lucky, I have great doctors.
Candy, regarding your medication questions: Another option is to ask your pharmacist if you have one you trust. My daughter is in pharmacy school right now (which is a 4 year doctoral program now due to the complexity of the topic) and is drilled constantly on medications, their uses, their side effects, and their interactions. It was a surprise to me how much she learned just in her first year of school.
0 -
Thanks, Spoonie. I enlisted runor's name to gain the protection of Pietro and Luigi although she is pretty tough on her own.
I am much calmer today. I told the story of what got to me at my MO appt above. She was trying to argue with me over something I know more about than she does. That really pisses me off. And these appointments are always long and slow and boring and painful. And then there is the treatment to treatment conveyor belt system they have for stage IV patients. Umm, this is all you got? Madness.
0 -
That’s very interesting Candy, that it may have happened slightly more than once. Definitely tell your MO (that makes you wait) when you see her. I think the next time you get those strange symptoms make sure your phone is close and sit down, just in case. I can’t remember, do you live alone?
0 -
Yes Marijen I live alone. Kinda freaky. Will the cancer get me? Or a stroke or heart attack? Or if I am put on strong blood thinners, will I bleed out sometime? I do wonder about blood thinners and cancer lesions. The lesions are stable now, but when they progress, and they will someday, will the blood being thin make them bleed? What if mets goes to brain--can happen---would I have a brain bleed and that is all she wrote? See lots of questions. I know NO doc knows the future, but I would feel some better if we could have a logical conversation of what is usually used for blood thinning in a cancer patient. I feel like I am having to find out my answers on my own. And deal with the fallout on my own. Sorry. I get to typing and thinking and around and around I go.
0 -
Nothing to be sorry for. Those are good questions. And you’re right they leave us to figure it out on our own.
We have to look out for ourselves. Did you know that Medical errors are the third leading cause of death in America? I will look around for you for answers.
Hehe, I just had a funny thought, you can just ask Alexa to call 911, she’s always listening anyways. Maybe she has the answers! Did you know that Amazon employees are listening to us without asking Alexa?
. I have found some soundproofing foam to put away my Firestick remote when I don’t want them to hear : j. Found at Amazon! Well I don’t ask Alexa anything -it’s just funny to me0 -
I don't have Alexa. Maybe I should train my cat to call 911. !!!??? I do feel like I am trying to balance all this myself- the cancer, the autoimmune issues, now the thick blood. I know the docs are busy with a full day of seeing patients, and I just have to look out for myself. But I am not a doctor.
0 -
Oh, Candy. Now I know what your problem is. You type and think at the SAME TIME? That is really dangerous.
Marijen, we have Google Home Minis all over the house. DH deletes the recorded history about once a week. My son refuses to have one of those devices in his house.
0 -
jaycee, I don’t trust Google one bit. I think they probably have back-up copies. I hate this data mining world. For searches I use Duck Duck Go. I always disable Google wherever I find it on my devices
0 -
HaHaHaHa Jaycee!!!! But truthfully, it does help to gather my thoughts when I post on BCO. I type out my thoughts, worries, etc and makes me feel better (sometimes). But it also gets my thoughts in order, ya know what I mean?
0 -
LMAO JayCee! A very very dangerous problem!
And sorry I missed your drs visit earlier in the thread. I remember reading it now, but forgot while typing my last post to you. Ahhh the mind, you never know what you're going to get on any given day! 
Totally understandable how you'd be frustrated when your dr doesn't listen. Ugggh. Just because they are drs doesn't make them perfect. Some of them seem to forget this.Candy, more valid questions. I sure hope your MO can give you some answers. Especially about the lesion bleed possibility. I'm not feeling well myself, in bed for the day, so I'm not up to googling around, hopefully Marijen can find some helpful info for ya. Oh, and you never know about your cat, I trained mine (with clicker training) to give me high fives, beg, give kisses, and to SIT! So hey, maybe using the phone isn't out of the question!!
0 -
I have to trust Google (even though I don't). I'm sitting here on a Chromebook. And my phone is Project Fi. All Google devices with Google Home Minis all over the house. DH wants me to able to call him if I fall anywhere and with my phone in my pocket and the Mini's, I can with just voice. It makes me feel safe. Or smothered.
0 -
Candy here’s one answer.
Blood Thinners OK for Cancers That Spread to Brain, Study Finds
https://www.medicinenet.com/script/main/art.asp?ar...
0 -
Marijen - I'd never heard of DuckDuckGo! Thanks for the tip. I also do not like this data mining world.
0 -
jaycee, well that’s a good reason to have them. Or you could just wear your phone on a chain or in your pocket. I hope they can’t watch you as well?
0 -
Hi Spoonie,
I'm so paranoid I put duck tape over the light on my fire alarm. Some of the new ones have cameras. Ugh! In Thailand gang types got caught putting little cameras in the walls of hotels and live streaming to the Internet. There's something else that happened recently, that I can't think of right now..
0 -
My son's mother in law won't take her phone to the bathroom.
0 -
Candy if you only have one button to push for speed dial, maybe your kitty could learn it
0 -
Spoonie---Sorry you are feeling poorly. Rest today, my friend. My cat does know how to turn on the kitchen light, but he taught himself. Came home from work one day to the kitchen light on. Creepy. No one else in the house and I turned it off before going to work. Since then, I have watched him do it. Takes the toggle switch in his mouth and flips his head up. Teeth marks on the switch.
Marijen- Thanks for the article. It mentions the thinner, Lovenox. I wonder about other thinners---Eliquis, Plavix, Coumadin. Is one less worrisome than another?
0 -
Blood Thinners Can Come With Dangerous Side Effects
Newer class of drugs can interact with multiple medications, researchers report
https://consumer.healthday.com/circulatory-system-...
Candy, there are foods and supplements that act as blood thinners too. You can search foods that thin blood naturally. Vitamin K will thicken blood so you wouldn’t want to eat foods high in Vitamin K. Search foods that thicken blood
0 -
Candy on the blood thinning meds, you can go to Drugs.com. Or you can do a search such as Lovenox vs. Eliquis etc. At Drugs.com, there are also patient ratings and comments, I think it’s the tab at the top at the far right. It’s work but...that’s what you have to do.
Spoonie so sorry you aren’t feeling well today. I know how that goes, thre aregood and bad days for us.
0 -
Oh and then you need to write it all down before you forget. I just send the links to my email and put them in a folder to look back at.
0 -
So this article was saying that people came into the ER with blood in urine and upon further investigation found bladder cancer. The thinner med made the tumor bleed more and thus the blood in the urine. So they found the cancer by accident. So..... the thinners CAN make the cancer lesions bleed is what it sounds like to me. Makes sense. So..... I would think the onc does need to be part of the conversation so we can choose the med to use and watch for issues in the future. Oh my, she might need to work outside her "box" of oncology and coordinate with the rheumy. Maybe I am not that crazy to want the onc and I to have a conversation. Now to convince her.
Marijen- thanks for the articles and I will also look up foods and supplements that act as thinners also, natural thinners.
0 -
Yes it didn’t take long to find those links - I just searched blood thinners and cancer lesions. Like I said it was a very good question. I print these things, stick them in my purse in case I get poo pooed by the doc. If she continues to blow you off, you need to find someone better if you can. But stand up for yourself and stay calm. See if she can come out of her box. If the clinic is taking on more patients I’m afraid that will mean less attention for you too.
0 -
Candy, I’m not sure why these two studies say different. But I think Spoonie can figure it out when she gets back. Is your MO a hematologist by any chance?
0 -
Marijen- Yes she is a hematologist. That is why I wanted to see her before my July 24 appt. I want to get her take on this Antiphospholipid Syndrome, if she has treated it before, what does it mean WITH cancer, and would she oversee my treatment of the syndrome AND my cancer. But I got shrugged off and told the rheumy can take care of it. ???!!!! Sounds like she just wants to take care of the cancer only. And sounds like she only wants to see me at regular scheduled appts and not if anything comes up in between appts. That is what worries me, I must schedule new issues to coincide with my scheduled appts. Do you think she could/should treat both since she is a hematologist and oncologist??? Should I find someone else that is both and will take me as a patient to monitor my whole situation??
0
