Starting Radiation October 2019
Comments
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Petite1 - It's easy to get pulled into social media. Although my motto about social media is "It is what you make it" meaning you have control over what you post, and what people/businesses/news you follow, and the general tone and use of it.
Kamboka - I hope you had a good trip to Florida and are starting to get things settled in your new home.
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I just heard from my MO. I contacted her about what I'm experiencing with Effexor and was looking at any other suggestions. She is going to wean me off of Effexor and go back on Amitriptylin. She then suggested either 300 mg of Gabapentin or acupuncture for the hot flashes. She is hoping the my hot flashes will get better over time.
Does anyone have any experience with Gabapentin or acupuncture?
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I made it to FL early. We decided to leave on Tuesday and spend the night half way and get to FL on Wednesday. I am so tired. In fact, I'm up now at 230 am writing because I caught cramps in both thighs while trying to sleep. I think I'm over exerting and dehydrating. I'm on Amazon now trying to order some magnesium. Since arrival it's been none stop with lifting boxes and picking up heavy furniture. I'm almost finished with the furniture but have dozens more boxes to go through. I still don't have the mattresses that I order so am sleeping on an airbed. It's not bad but hard to get up from when I have to go potty every two hours. My brother, sister in law and mom are are great help. I'm not sure what I would have done without them. We missed any rain from the hurricane but got stuck in a powerful 30 minute storm yesterday.
Sorry to hear about the meds not working for both of you. I tried wellbutrin years ago and the only effect I had was a dry mouth. It didn't help me with depression or weight loss. I stopped after a few months.
I'll sent more news as I can.
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I didn't see your last post. I have tried both gabapentin and acupuncture. The gabapentin I've tried several times when I had nerve problems with shingles and when I had this nerve damage to my feet after chemo. unfortunately for me, it didn't work. My nerve doctor asked me to try it again at night to help go to sleep. It does make you drowsy at first and helps to drift off to sleep so maybe that will be good for your sleep problem.
I've tried acupuncture many times for various reasons. I find it to be very relaxing. I think the effects will depend on your practitioner. The bad thing is that insurance doesn't normally pay for it.
Give them both a try and see if you get any relief.
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Kamboka - I'm so glad you and your family made it there safely. I will pray that the rest of the unpacking goes well and you can get some much needed rest. I hope that now that your mom is there and sees your house that she would be happy to stay there too.
I have sent a couple of questions to my MO about the meds but I'm planning on taking the gabapentin and see what happens. I sleep very well on the Amitriptylin alone so taking the gabapentin would be just for the hot flashes. Last night I only took a 1/2 dose of Effexor and I slept like a rock!
Happy unpacking!
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Kamboka, I am glad you made it to Fla. I am glad you have some help with unpacking and moving furniture. It makes my muscles hurt to think of it.
mocame, I haven't taken any of those meds, but I am glad you slept well.
It was 1 year ago today that I found the lump.
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mocame: I'm so glad you got a good night's sleep with the new med. It is so important to get rest every night. I hope it continues for you.
petite1: you've come a long ways in a year. I'm so glad that you are on this side of the challenge!
We are still working hard since my brother and SIL have to leave on Tuesday now. He has been a champ with doing everything I need. I will have to hire someone to help me with a few things later. Today we took a few hours break and drove up to Mayport to have some great fresh seafood. Tomorrow, I'm heading to St. Augustine to pick up an office chair. I got one off FB and he liked it. I'm going to surprise him with one that he can take home with him.
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Kamboka - That is so nice that you are getting him a chair for himself! It sounds like you have a great helpful and supportive family. Checking out all the new food, shopping, and scenic places in FL will be fun.
Petite1 - How are you feeling about being at the 1 year mark? People react differently to the anniversary dates. All reactions are valid.
I contacted my MO to clarify some things with her about the new medication regime. I'm still weaning off of Effexor and then in 1 1/2 weeks will go back on a low dose of Amitriptylin. She will only add the Gabapentin on if I need it. Since I've been weaning off of the Effexor, I have been sleeping really well but have been dreaming a lot! I can have up to 4 or 5 different dreams a night! Thankfully not bad dreams but they are definitely weird and odd dreams.
I saw my BS this week for my 6 month check. I guess I will see her every 6 months for years. She said everything looks good from the radiation and thought that my reconstructed breast was noticeably softer than the average reconstruction patient's radiated breast, so that is good! I'm still putting lotion on 2 times a day but have switched to just Aveeno because I got new bedding and didn't want to risk staining the new bedding. LOL! I guess the routine lotioning is helping. Yay!
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Kamboka, I am glad you have help. I love St. Augustine. Jim and I had ridden the Trolly tour many times. We both are somewhat history buffs. LOL
mocame, I am glad you are getting some rest. I still use Aquaphor and have ruined most night clothes, undershirts and sheets. After 1 year the surgical breast has softened. It is still bigger than the right breast. Strange. It was so tiny after surgery. When I got my surgical bra they had to do modifications to create a AAA cup. LOL. The right was an A. Now the left is probably a B. Since I wear compression bras, most of the time I don't notice the difference. On special occasions, I wear a regular bra and put a removable cup on the small breast. We do what we have to do. The mamo and ultrasound are next week. The RO and MO visits are the week after.
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Petite1 - Let us know how your appointments go next week. I have to call my PS and get an appointment to start talking about the surgery to switch out the ruptured implant and other implant. I've been putting it off and dreading having it done. They tell me that the switch out surgery is easier than the original reconstruction surgery but because I had radiation to the one breast, the skin does not heal as well and will take longer to heal. Plus since the skin is tougher due to the radiation and that side has slightly decreased in size, I may have to go with smaller implants but I'm already built small so we will see. That is what I need to talk to them about. I love the new bedding that I got and don't want to ruin it
When I was using the Aquaphor, I had bought a bunch of cheap ($1.68) camis from Walmart and just keep switching those out every night so I didn't ruin too many things besides the camis. Too greasy but it did the job apparently.0 -
mocame, I bought some of those too. I think it was you or Kamboka that told me about them. I still have them, but the white one is gross and is gray on one side. I guess I should throw it away.
Kamboka, Are you all settled in?
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Ladies, I'm writing to you now as I sweat. My A/C unit died yesterday! I still had my family here with me and it was a miserable night for them. I had bought a home warranty and they couldn't come out until tomorrow morning. I so hope they can repair or replace quickly. It's 86 degrees in the house. It's cooler outside but I don't have screens on all my windows to keep open. AT least I have fans in each room. I have to drive my mom home on Thursday. I'm so tired. In the middle of all this move, I got a call about a new job in the agency. I had to do a brief interview today. I think it's a done deal just finalizing some things. It will be a blessing since it's a bit more money and security.
Sorry I'm not keeping up on all the news. I see there are some appointments in the near future. I'll be more engaged when I get back next Monday.
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Kamboka - Oh no! When it rains, it pours! AI'm so glad to hear about the new job. I know that will ease your mind a little bit about your future financially. Good news in the midst of the bad. How is the unpacking going?
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Kamboka, Hopefully the A/C will be fixed when you get back. Good news about the job.
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A/C was fixed on Wednesday, thankfully. I'm now on the road driving my mom back home. We have stopped to spend the night before finishing up the last 6 -7 hours. Today, we stopped for three hours in Savannah and took a city tour. Mom has never seen the city. It was nice but hot on the unairconditioned bus. I'll fly back to Jax on Monday.
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Kamboka - I'm glad you got the A/C fixed. I have heard wonderful things about Savannah but I have never been there. It's on the bucket list. Have a safe rest of your trip back to DC and flight back back to Jacksonville.
I am hosting my son's graduation party (at last!) on Sunday so if you don't hear from me until at least Monday, that is why.
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Kamboka, Glad the a/c is fixed. Have a safe trip.
mocame, Have fun and don't work too hard.
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Hello. I’m posting as I need some advice from someone that has went through radiation before me. I finished radiation end of April 2020. Today I noticed some redness on my breast (that’s 4 months after end of treatments). I am freaking out as I am worried It came back! Did anyone experienced this kind of side effect 4 months later? Please reply as I am worried!
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Eigna, I developed a rash that was treated with a steroid cream. Have you talked with your doctor?
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mocame: Hope your graduation party goes well.
I'm flying back to FL on Monday. Then, I only have two more days of vacation but a lot of stuff to do. I just want to do nothing and sleep late for a while but guess that is not going to happen.
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Kamboka - I hope your flight goes well today and that you will get a lot done in the next few days. Any update on the new job?
The party went well. I was concerned because they had been calling for rain and I have a small house to fit all those people into. I was working on getting space set up on our deck and a tent in case it rained. But it ended up that we had nice weather and sunny skies! Yay! I had a couple people not come because of social distancing inside if it would've rained. We have a large 1 acre yard so social distancing outside worked great! I, though, am exhausted after being on my feet for 12+ hours Friday, Saturday, and Sunday. Now, hopefully I won't have to host that big of a party for awhile.
Getting ready to send my oldest off to college again this week. Not a big deal because she is a Junior and this is her 2nd year being in an apartment. She's pretty self-sufficient. 0 -
mocame, It sounds like great party.
Kamboka, have a safe trip.
I have the mamo and ultrasound Tuesday. Weds. it will be 1 year since the cancer diagnosis.
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Petite1 - I hope your mammo and ultrasound go well today. How are you feeling with your 1 year anniversary date here? Even after my 2nd dx, these dates are ones that I will probably always remember. Your life will never be the same but I have found that when my dx dates come up, for me, it is one of reflection, counting my blessings, and realizing the wonderful friends/family that have helped me through them. Some people I know use those dates as a date of reflecting on how strong they were through everything, and I also know people that use it for bc awareness, etc. Each person handles it their own way.
I will be thinking of you this week.
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mocame, So far the techs said looks like surgical changes. I have the RO and MO next week. They will have the complete reading. 2019 was not a good year and now we have 2020, which is not good either. But at least I am around to see 2020.
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Petite1 - Yes, it's been an interesting 2 years to say the least. It took me awhile to get to the mindset of feeling more "normal" after my first diagnosis. Now after the 2nd diagnosis, I know that things will never be "normal" for me but am doing my best to feel and look like I am leading a normal life. And besides my dr appts, meds, and physical issues, I pretty much am. My diagnoses have been good so I realize that I have nothing to complain about considering everything. Let us know how your appts go next week. I have my RO and MO appts coming up too, including a Prolia injection, the two weeks after yours.
Have a good day!
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Good morning, mocame. I guess we are living the new "normal". My big adventure for today is grocery shopping.
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mocame: Remind me what the party was for. I'm glad it didn't rain and more people could come. Being a hostess is a lot of work and that's why I don't entertain.
petite1: Glad the preliminary tests went well. Reminds me that I need to find a new MO as I'm due for my 3 month check up in September.
I'm still exhausted. Seems that the AI has kicked in and every joint is stiff, especially my back. I've decided that I need to find some handicap height toilets as I'm having a hard time getting up with these stiff joints. My mattress came two night ago and I had someone help me put it on the beds yesterday. It might be too soft but I have 180 days to test it. Today, I was in the hottub cleaning it and I thought my back would break. Now, I need to finish the cleaning and start the water. My sister and future BIL are coming tomorrow just to overnight before they head to TN. I hired a fellow to pick up my last bedroom set. He and his helper cleaned out my garage for me and didn't charge. Of course, I gave them a big tip. It's hard sometimes being single and a woman w stiff joints. I know I'm overdoing the lifting but what can I do.
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Petite1 - Sometimes grocery shopping is a big adventure! There are still some things in the grocery store that aren't stocked normally yet. And, of course, forget about finding disinfecting wipes. They are sold out in minutes at Walmart, I hear. I personally haven't seen any since the shutdown in March.
Kamboka - It was my son's belated high school graduation party. I'm so sorry you are experiencing stiff joints. It's probably from using them more than you normally do, plus the lack of sleeping in your normal bed. You have had a lot going on for an extended period of time. Hopefully it will get better once things start settling down for you.
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Petite1 - As we have been talking lately, both you and I have dx anniversaries about now. Well, last night my daughter mentioned to me that my 2nd dx anniversary was in 2 days (tomorrow). I told her I knew that and reminded her about how after I got the dx news, I left for a trip the next morning with my parents and my sister and what an amazing trip I had. She left the room and out of nowhere I suddenly burst into tears, which totally surprised me. After that trip last year and going through radiation, I had planned 5 trips in 2020 as a way to get away and forget about the "newest normal" life and see parts of the world that I have never seen. Well, we know how 2020 turned out. I've had 3 trips get canceled, another one is probably going to be canceled from what I hear, and the only trip I did go on was a little stressful due to my work's very strict COVID rules. I didn't realize until last night how much those trips meant to me as far as dealing with my cancer diagnoses, side effects, and future outlook. One of the reasons why I love going to Disney and consider it "My Happy Place" is because when you are there, you are in a "bubble". The reality of the world you deal with doesn't exist as much. That was taken away from me in 2020. That was why I got emotional. It was quite a self-reflective moment.
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Kamboka, It sounds like the house is coming together. Moving is a lot of work. I am sorry your joints are bothering you. My left hand middle finger is acting up today. The right hand middle finger is usually the problem.
mocame, If I think about it too much, I get a little teary eyed.
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