Starting Radiation October 2019
Comments
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mocame: That was a very honest and reflective comment about your anniversary. I don't even think that I noted when mine came around in January. I do understand about your planned trips to have something to look forward to and then COVID came. I fear that 2020 will have such long term negative effects on so many people--especially children.
Unfortunately my joints are getting worse especially my ankles and knees. I am trying to be careful so I don't fall. I got out of the car the other day and my ankles almost gave way. Perhaps, it the extra activity, or the fact that I"m not taking my full dose of turmeric or it's just the AI has kicked in.
I came home this afternoon after getting some dinner and realized I had a nail in the tire. I could hear the sound of the air flowing out. Luckily, I found my AAA card and the fellow came out within 30 minutes. I have that little tire on and will have to go to the tire store tomorrow. Tomorrow is also the day I start back to work, have two consultants coming to give me some house estimates and my GYN appointment. Needless to say, I really want to call in sick but I did that on thursday and Friday.
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Kamboka - I'm so sorry you are having all these problems right now. You don't need that. I would've hoped the AIs have already kicked in by now? Hopefully, it's just from your increased activity. I will be praying for you today that everything goes well and that you have a smooth transition back to work.
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Kamboka, That sounds like lot on your plate. Just think how good it is when it is all done.
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I had a GYN appointment today with someone I found online. I get to the office and get called in by the nurse. She didn't even look at me and was hurried and gruff. She seemed mad when she couldn't get my BP and had to change to a different cuff. I had to get my urine specimen and they gave me a cup with no lid. Then I had to sit it in a box with several others with no lid. The nurse proceeds to do the dip test right there by the scales, without gloves, and then she goes to throw the dipstick away and I saw urine drip onto the chair. I decided then that I did not want this office to do any procedures on me. When she took me to the back, I asked how long it would be as I wanted to tell the doctor why I was leaving. She said curtly, that she didn't know. I then just let her have it. I said that they were making people wear masks and on the other hand, they were practicing unsanitary actions. The doctor was standing right there and he immediately and cowardly slipped into a patient room. Now, I'm trying to get another appointment with someone at Mayo. The scheduling person called me this morning for my MO appointment next week.
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Kamboka - Oh my word! That was bad on so many levels! So unprofessional and risky! I'm so sorry you had to go through that. How are you handling all of the stress from this, moving, work, etc? I hope you have a better day today!
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Kamboka, Wow. That is the worst. I can't imagine, it is so unprofessional and unsanitary. Mayo is so much better. Jim had to go there once for CHF. I hope you don't have anymore bad experiences like that.
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I'm so glad I have my MO appointment next Friday at Mayo. My joints are so stiff even from sitting 15 minutes. I get up 4-5 times a night for the bathroom and I fear that I'm going to fall. I'm so unstable. It seems like my turmeric quit working. I might have to try a different AI. Other than the stiffness the letrozole hasn't been too bad.
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Kamboka, Maybe the stiffness is from your life changes. A new bed, different routine, etc.
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Hi, ladies. I had the follow up with RO and MO. I had some good news. I don't have to see the RO again. Yay And my bone scan shows improvement. I have gone from osteopenia to normal range. WOW MO said keep doing what you are doing.
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petite1: Congrats on a good report from your doctor visits. How did you improve the osteopenia? Were you taking Prolia or something else?
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Kamboka, just exercise and calcium +D. The calcium +D is 2 doses. I use to be bad about taking 2 doses, because you can't take them together and I have to wait 6 hours after taking my thyroid med. Since Arimidex I force myself to remember and my husband reminds me.
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I'm impressed with Mayo already. I already have my MO appointment for next week. The GYN team called me today and got me all fixed up for the doctor appointment, surgery date and pre-op appointment. They even helped me to find someone to pick me up from the hospital after surgery since I don't have any friends or family here. I'm keeping my fingers crossed that I luck out and get some good doctors. They seemed very professional which is so unlike what I just went through in DC.
petite1: I'm hoping that they will schedule another bone scan and density. It's been 1 1/2 years and it's hard for me to tell if I have new bone pain from existing.
I might be starting a new job within my agency that might require a shift in health insurance. I hope I can keep what I have. I'm trying to see if I can wait to start the new job until after my outpatient surgery on the 18th.
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Kamboka, Mayo was wonderful to my husband and I. I am so glad things are working out for you. I think an insurance gap would be a serious problem. Hopefully you can wait until the 18th. How are things with the new house?
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I'm almost finished shopping on Facebook. I have most everything I need. I was thinking of painting but might wait since I have all this medical stuff in the next two weeks. Today after my shopping, I replaced all my cabinet knobs in the kitchen and bathroom. I think there were almost 50. My electric screwdriver, that I just bought, was worthless. I ended up using the manual screwdriver. It looks much better. I was going from gold to nickel. After this coming Tuesday, when the recycling trash happens, I'll be able to have room in my garage to park the car. Today, the joints were better. Not sure if it was a natural progression or the fact that I started back on my Vit C mega dose and a new supplement recommended by a Uber driver, called bio PQQ. He said the football player, Peyton Manning, used it for his nerve damage. I'm always game to try something that doesn't involve heavy prescription meds that have worse side effects than the problem. My sister and her fellow are coming back tonight to spend the night. We plan on going to Mayport tomorrow to have lunch and buy seafood. It's so cheap there. They are bringing a cooler.
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Kamboka, My joints could never handle a manual screwdriver that long. My middle finger was locked up this morning. Everytime I think it is better, these joints act up again. Yum, seafood.
mocame, haven't heard from you in a while - are you OK?
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Luckily, my joints in the fingers are not affected. My brother is sending me some bits to go in the power drill that he left me. I only had one bit and it was the wrong one.
Tomorrow is my GYN consultation. I hope I have a competent doctor.
Yes, we've not heard from mocame for awhile. hope things are okay.
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Kamboka, All my labs have come in and everything is in normal range. I have my PCP visit Thursday. If he has an intern or student with him, he is nice, but if not, he is not. We have had a lot of rain and I haven't been swimming. Yesterday, I did my pedals so long I had trembling legs when I got up. I haven't been to the gym in a while. It gets too crowded. They have started all the classes back up and here come the people.
I hope she is too.
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Hello! I'm so sorry! Things have been busy and I haven't had a chance to get on here.
Kamboka - I'm hoping your stiffness is just from all that you have been doing. You have been doing more than usual and for an extended period of time so I suspect that could cause your stiffness. Remind me, what surgery are you going to be having? I'm so glad you have finally found good doctors that will take care of you and seem to know what they are doing. I haven't had great luck on buying from Facebook Marketplace but I still check there for things. I need you to do my buying for me!
How did your GYN appointment go?Petite1 - Great news on the bone scan, labs, and eliminating another doctor visit! I have my RO visit on Friday. How much calcium & Vitamin D3 do you take? I've been exercising and I've been taking 600 mg Calcium and 12.5 mcg Vitamin D3 twice a day as the doctor said and I was on them for about 2 months when I had my bone scan showing osteopenia. Now they want me to get a Prolia injection next week.
I am back on my old migraine medicine that they are also using to combat my achiness and hot flashes. Because I went off and then back on it again, I now know that some other side effects that I've had for years is now from this medication too. Next Wednesday I am scheduled to have bloodwork done, see my MO, and then get my Prolia injection. I'm a little frustrated with my MO. She told me that the day after the injection I might feel like I have the flu. When I read the information on Prolia that they gave me, it made me question whether I might also experience some of these symptoms at each shot or on an ongoing basis. My work is very strict about not being able to go to work if you have any symptoms related to COVID like aches, pains, joint stiffness, etc. Some of the same symptoms as the SEs of Prolia. Plus, if most people get these side effects I would need to schedule a sick day and I'm trying to keep as many sick days as possible for my surgery coming up. She didn't respond to me about my questions over a week ago except to copy me on an email telling her nurse to schedule me in the clinic or via Telehealth to answer my questions before my appointment next week. I didn't think my questions were so hard to answer that I would need to talk to her in person (and need to be billed to the insurance company plus my copay). I just wanted to clarify what I read vs. what she told me previously. They also haven't let me know if my insurance is covering the Prolia shot because she said some insurance companies don't cover it. So far I have not heard from either of them. Grr!
I scheduled an appointment in 3 weeks with my PS for a consultation about my future surgery to replace my ruptured implant. I'm a little nervous about that because I'm afraid he will say that I'm not a good candidate for an exchange of implants due to my radiation. We will see.
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petite1: Congrats on all your tests coming back normal. People who haven't had cancer don't always understand how happy we get when that happens. There were some really nice things about the covid lockdown in March and April. Things were less crowded. The roads are back to normal as well as your gym. I am back to having severe stiffness today. I'm so worried that I'm going to fall. Several times, I've caught myself before falling. I will ask the MO when I see him Friday, if I can take an AI holiday. I think he will want to do the bone scans since my neck and back are killing me. I would love to get in the hottub with the jets but was afraid I would fall as I was so stiff.
mocame: I keep forgetting about your reconstruction surgery since it's been about a year now I learned of it. They say to wait a year from radiation and we are almost there. You'll have to let me know about the Prolia. I get you when you talk about any symptom causing us to not be allowed to either work or continue with our regular lives. I too get frustrated when I just want a simple answer and the medical folks have me running in circles. An example, I am having to hire a helper to come pick me up from my surgery in two weeks. The RN insisted on coming to do a home visit first and asking all kinds of crazy questions. All I want is to get discharged from the hospital and dropped off. Well, they have to stay a minimum of four hours. He asked if I needed them to do any housework. Wow. Might as well find something for them to do to make the money instead of just watch TV. He could have asked me this over the phone or don't ask at all.
You both will get a kick out of this. This morning I go to Mayo. It's my first time there. I have to park a ways off so walk to the medical building. The receptionist can't find my name. Turns out, I got the dates mixed up. It's tomorrow! Oh my, how am I keeping a job when I can't keep my days straight.
I do GYN tomorrow and MO on Friday. The GyN is the consult for my abnormal uterine u/s. I just need a biopsy but can't do one in the office d/t some past scarring. Now, I will end up paying thousands of dollars (insurance hopefully) for the same thing. I need this done before I can confirm my bariatric surgery. It's a bad time to start a new job but I'll have to push through it.0 -
forgot to say that my nerve damage in my feet are driving me crazy. Do either of you have the neuropathy?
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mocame, I take the same dosage as you do. I wasn't very good about getting it in twice a day, but after starting Arimidex, I made sure to take the required dosage. Not answering a few questions, unless you schedule a televisit sounds like they want to get paid from the insurance company for a separate visit. My husband had a televisit and had to pay the co-pay. Do you have a breast navigator that could answer your questions? I haven't talked to mine in ages. I get so much information from this site. LOL
Kamboka, no neuropathy so far. Occasional stiffness, especially in my fingers and sometimes toes. Good luck scheduling everything. With so much going on in your life, a mixup should be expected. I have appointment cards on the refrigerator, scheduled in my day planner, get emails, text messages and calls from my doctors. So far I haven't mixed them up, yet. If I wasn't retired, I would mix them up or forget them. LOL
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I never mixed up appointments when I was going through treatment until now.
I think it is because medical appointments are not my main focus and I mixed up the days. I had a good professional meeting with the doctor and nurse today. They have everything all fixed for my procedure next week. The only drawback is that they can't tell me the time of the procedure until 4 pm the day before. I have to let the nursing company know and was hoping to have the time earlier. The doc is also ordering a CT scan for my stomach next week since I keep bloating even when I lose weight. He said he could give me a mild sedative since I'm claustrophobic. I hope I can do it without being knocked out.I went to Walmart to get my tired from the one with the nail in it. They said my tires were bad and I ended up buying three more. Oh well, I guess I would need them soon anyways.
I'm still stiff but managed to get a few hours of being okay enough to climb into the hot tub to clean it. It's in a space where I can't walk around it so have to jump in to get to the other side. My topper came today so hopefully, I won't have to do the cleaning as much as I have without it.
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Kamboka - I don't have any neuropathy but I haven't had chemo and that's usually when you get neuropathy? Correct me if I'm wrong. You have so much going on that it is understandable that you might get your appts mixed up. It's a lot to keep track of. I'm hoping that your stiffness is due to doing more lately than you are used to. I've been more stiff and hurting this week, especially this morning. I had a harder time getting up and getting my exercises done. I've been going through my house and cleaning stuff out, walking a lot more, and work has been busy so I've been up and walking around more. I thought they say being active helps the stiffness/pain be less? Maybe there is a fine line but I don't think I've been overdoing it. Let us know when you procedure is next week and how your CT Scan goes. Have you had one before? I don't mind them as much as MRIs.
I'm very frustrated with my MO right now. I called her nurse a few days ago and left a message. The only time I have heard from the nurse is when she left a message on my direct work # after hours. I NEVER give that # out to anyone as an option on how to reach me. I didn't even know that they have it. She didn't call my cell phone or my home phone which are my primary #s. She said she would call back yesterday and I didn't hear anything. Petite1, I am about to ask about Prolia on these boards but I wanted official information from my MO to give my boss and the people in charge of the COVID rules. Grr!
I hope everyone has a great day! Any plans for the holiday weekend coming up?
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Good morning, ladies. I am heading to the PCP .
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Petite1 - How did your appt go?
So, I'm a little frustrated with my MO. I still hadn't heard from them so I called again today and again could only leave a message for the nurse. I told her the correct phone #s to call and to call before 4:00. Mentioned the simple questions I need answered for my work...I got a message left on my phone AFTER 4:00 this afternoon saying I will get a call tomorrow to schedule a telehealth appt to discuss my questions. My injection is scheduled for Wed immediately AFTER I meet with my MO for a regular visit. Monday is a holiday and I need to let my work know what is happening before Tuesday so how are they going to fit an appt in?! Then I would have 2 copays within 2 days time! They still haven't told me if my injection has even been approved by my insurance yet. I may just tell them I'm not scheduling an appt and see if my work will let me just see how I feel the next day or just take it off and lose the sick day.
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mocame, sorry that your doctor's office is not being very professional. I think that nowadays the service we get from the medical field is so iffy. Too bad you have to pay the co pay twice and even then may not be approved for the drug. I've heard others on this forum talk about not being approved for Prolia. I think your stiffness is the AI catching up with you. I've done more exercise in the last three weeks and my stiffness is worse.
The MO visit went really well. He spent a long time going over my history. He said we would not do the mammogram until the next visit with him which is six months. He will also do the bone density test then. I guess that is February. He did say that I could take a 2-3 week AI holiday and he ordered Aromasin. I'm on my third day of no letrozole and no change yet.
My brother and sister in law are here and have helped me with a lot of other household chores. They will leave in the morning to go back to NC. We finally went to the beach today and they loved it. They both say how much they like JAX.
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mocame, I am sorry your have to deal with such unprofessional people. My PCP had some terrible office staff for a while, but seemed to get rid of the bad apples. Most of the time things go pretty well. He said my labs are better than his. LOL He talked a bit about COVID-19 and what he has to deal with. He lost a 27 year old patient from it and many nursing home patients. I told him I was glad I was retired.
Kamboka, did you go for seafood? We did shrimp boil with corn on the cob. YUM
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petite1: glad your labs are good. Every little victory is appreciated. My B/SIL drove up to Mayport on Friday and got shrimp to take back with them. On Saturday we got takeaway at a local seafood place near my house. They were happy. I finally got to the beach yesterday and stuck my feet in the water. I couldn't hang too long as the head was so hot and my back was killing me. I noticed today that Mayo has already got me a spine center appointment for next week. They are fast! It's been four days without the letrozole and I don't notice any improvement yet. I have the CT scan on Wednesday. Friday I go for my drivers' license.
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Kamboka - I'm glad that the Mayo is on top of things for you. I hope the aromasin works for you.
I apologize for not being on here much again. My life took an unexpected turn this weekend when we adopted a dog from the humane society! I didn't expect going into the weekend that we get a new family member. It all happened suddenly but he is a cutie! He was a stray that we think s part schnauzer, part poodle and not sure if part anything else. He took up our weekend especially since he has very bad anxiety. Now this morning I think he may have kennel cough.
To make a long story short, I didn't have my telehealth visit. After talking things over with the COVID people and my boss at work, we decided that a letter from my MO saying what the SEs from the Prolia could be and what guidelines I need to follow when I'm at work, would be okay. So the visit was canceled. I will have bloodwork, visit with MO and the prolia injection on Wednesday.
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Good morning, Ladies. mocame, your new fur baby sounds adorable.
Kamboka, glad they are moving quickly.
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