Starting Radiation October 2019
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mocame, Maybe it is my age. I am post menopausal for 15 years.
Kamboka, My journey has been very short compared to you, mocame and others.
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Hi everyone. It's been quiet as I think all of us have finished our radiation treatments. I miss talking to everyone daily. I'm sure we are moving to other threads. I've been lurking on some hormone threads reading about how others are coping with taking these pills. Where are you guys hanging out at?
I hope everyone had a wonderful holiday weekend.
I'm heading to outpatient surgery on Wednesday to get my port taken out. Then I do my second opinion on Friday.
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Kamboka - Hello! Yes, I've been lurking on the hormone threads. Just got my Zoladex injection on Friday. Ouch! Will start taking Arimidex this Friday and see how it goes. So far no SEs on Zoladex but it's only been a couple of days. Figuring things may start to change when I take the Arimidex with it too.
I'm glad you are getting your port taken out. I'm sure there is some finality in getting that out. You have gone through so much and now you are starting some of the final steps. Let us know how your second opinion goes.
Best wishes!
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Hi. It does seem weird not to post an update everyday, The skin is coming off around the boost site. It started Saturday. I know this sounds strange, but I didn't wanted to inspect it for the last 2 days. I just cleaned it carefully and put on Aquaphor. I read, on one of the radiation sites, that there is not much else to do with it. The thyroid problems have started. I had labs this morning. Follow up with the oncologist tomorrow.
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petite1: I was worried when my skin started peeling but now it looks great. Sort of like getting a $300 spa treatment to slough off the old skin. I do have areolas around the nipple that are two different colors. Other than that, you can't tell. I think in another week, you will be on the upswing with the skin problems. It's been almost a month and I am still using my creams on the skin. It doesn't hurt especially in the winter.
mocame: How often is your Zoladex? I hope you continue to be symptom free. I'm having joint stiffness if I sit longer than 30 minutes and it takes me a while to stretch before walking. I also realized last night that my night sweats were in full force. It's weird that the port removal is bitter sweet. One the one hand, it signals intense treatment is over but on the other hand, it's like losing a piece of me that's been through everything with me.
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My Zoladex injections are every 28 days. I'm meeting with my gynecologist in a couple days to discuss the possibility of an ooph instead. I'm really dreading taking the Arimidex. I just don't hear good things about the SEs. If I do experience some joint/bone SEs, I'm going to check into some essential oils and see what they can do. I also need to start the additional exercises that I am adding to my routine but it's been so busy with work and the holidays that I haven't had a chance.
Petite1 - Remind me, did you have thyroid problems before radiation or did it start right now? The reason I'm asking is because I started with thyroid issues soon after I started radiation and I'm trying to figure out if the thyroid stuff is an indirect SE of the radiation.
Kamboka - Do you consider the SEs, that you are experiencing right now, doable? I hear that with some of the medications, if you can get through the first 3 to 6 months, some people say they get better. Just seems like they are really intense for a lot of people for those first few months.
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mocame: At the moment, the SEs are doable. I think if I could exercise, it would help. When I'm moving it's better. I need to lose weight. I'm borderline diabetic so I convinced my PCP to start me on some diabetic meds to see if that can help me to lose the weight. I'm not depressed but when I get stressed, I eat. Which is why I've gained most of my weight back from earlier in the year.
The worry for me is mainly the long term problems with osteoporosis and fractures. If I have any major medical problems again, I might not be able to keep my job. Since I'm single, if I don't work, I don't eat.
I guess if I were not already menopausal, I might opt for the surgery as well if it gets rid of another drug that could cause problems. Do you do acupuncture and/or massage? I wish I could afford massage daily.
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Kamboka - I understand about keeping your job. Although I have a husband who works, I am the only one who has the option for health insurance for our family and retirement. Plus I have one child in college and one that is a senior in high school and going to college this fall or next.
I worry about the long-term effects of these drugs too. I have a coworker who tried three of the drugs over a period of 3 years. Couldn't handle the side effects and still has problems with her feet ever since. I don't do acupuncture or massage. I can't afford massage either and I'm not sure how I feel about acupuncture. I don't know anyone who has done that and would need to do more research on it.
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Good morning. Heading to the oncologist today.
Mocame, yes, I have thyroid problems, but it has been stable for decades, with medication. There is a good post by a doctor that explains what radiation does to the thyroid and why some have problems after radiation. bc.org has so much good information .
Komboka, my skin is better everywhere, but the wound. I keep putting on the creams and lotions. It should be better is a few weeks.
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petite1: Yes, my one wound area took a bit longer to heal. I ended up using neosporin ointment on it to facilitate healing. How did the MO visit go today?
mocame: I do understand about the costs of these extra treatments. I'm not sure how much the acupuncture helped since I was taking that, hypnosis and counseling all at the same time. I go to acupuncture now once a month since the lady is so nice and it's almost like another counseling session.
One of the main reasons I stay at my job is for the health insurance. There were many days I didn't feel like going to work but needed the job. I did not prepare myself and purchase disability insurance so would have had nothing coming in. I think this has me worried with the long term effects and the possibility of a bad fracture that could cause me to lose too much time at work. I guess we just have to think positive and not worry about anything unless and until it happens.0 -
Good morning. The follow up went well. We discussed 3 options for the continued treatment. Arimidex, Kisqali Femara co-pack, and chemo. Anyone on Kisqali Femara co-pack?
Kamboka, Just about everything has healed, but around the scar. The staff was amazed how quickly the other areas healed. I am thankful for that. I still have some periodic sharp pain in the armpit. The ARNP said that might be a lifelong issue.
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petite1: I just noticed that your ER/PR is both positive and negative. I know that the AIs are very effective for highly positive tumors. Did they do the predictive studies? I think there is a thread about Kisqali. I would search for that and see what those ladies have to say about it.
Today, I had the port taken out. I was hoping for some nice sleep but was awake the entire time. I didn't feel any pain thankfully. Now. some of the lidocaine has worn off and I do feel the area. My other problem is that I'm alergic to tape and I know I'll have problems since I have to keep this covered for three days.
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Kamboka. Yes ER+. The predictive scores are "High Risk".
The skin is coming off my armpit. I am back to no deodorant. The CEA results came in, all normal. Yay. PET scan next week.
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petite1: After all the peeling, you skin should look young and pink.
Glad your CEA was normal. Wishing the best for next week's scan as well.This morning I took off the dressing since I was in so much pain last night. when I did, I had red and raw skin around the edges from the adhesive. I tried to put some cortisone cream and aloe on it but it hurt too much. I'm trying to embed a photo of the area. I also have a red raised area where the EKG leads went. It's hard having this type of reaction when everything involves some sort of tape.
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kamboka, That doesn't look too good. When do you have follow up with the surgeon?
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Kamboka - I would definitely talk to the surgeon/doctor about what to do about that. Not fun!
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mocame, Good to hear from you. How are you doing?
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I had my second opinion today with another doctor at the better hospital in town. She was very nice and thorough. She stated that she was not one for scans or markers and she explained why. It made sense. She did say that I needed the bone density every 1-2 years and the mammogram annually. She also says that the mammogram should be done in January (my diagnosis month) instead of my waiting till April. That is because my unaffected breast should not go more than one year without a mammogram. She says that if I get mets, I would only be adding Ibrance to the regimen. She is recommending me for a clinical trial with Johns Hopkins for another drug similar to Ibrance that could be used for prevention. I'll call them to see if I meet the criteria. She did look at my tape allergy area but didn't think it would cause any major problems. I started using my calendula cream on it since its for radiation burns. It's not as raw so it doesn't sting.
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Kamboka - Seems like this doctor is on top of things, giving you options, and explanations. I like that. I hope the taped area continues to heal and doesn't give you any problems.
Hello, petite1! I am fine. My skin is just tan and I'm still putting lotion on at least twice a day. It's good! I have been on my Zoladex injection a week now and so far I haven't had any side effects. Yay! I will be starting the Arimidex tonight and hope that goes well. I met with a gynecologist this week to talk about keeping on the ovarian suppression versus getting an oophorectomy. She was young and very nice but I wasn't impressed by the office staff and the appointment as a whole. I got no new information than I knew before, no real specific information, she knew nothing about Zoladex, and when I asked if they have done a lot of these surgeries, I got a quiet "Um, yeah." Her schedule was so wide open that I could've picked my time and day, including getting in this month already if I wanted to. Made me wonder if they really do that many of these. I emailed some questions to my MO and also asked if she has someone she recommends through that hospital. Will probably get a 2nd opinion. I've also been trying to do some of my own research to help with my decision. Also busy working and getting ready for the holidays. There just isn't enough hours in a day! LOL! How are you?
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mocame: It is scary when a doctor has too wide open schedule. I then wonder why that is the case. It's always good to do the research beforehand.
I've been busy shopping too. Normally, I'm not in the States during Christmas so don't have to worry about shopping. My problem is I can't make up my mind.
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Kamboka - I always wondered what it would be like to live in another country. I've only ever been outside of the United States a few times and that has been just to Canada and the Caribbean. Don't other countries celebrate Christmas too? Maybe not on the same scale as us, though?
Just took my Arimidex pill. I was so nervous! I think I need to read more stories about women who have done well on them so I'm not so nervous about it. I hear too many stories of women who had horrible time on them.
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mocame: I keep getting reminded that most people who do well with all the trappings of cancer treatment don't always keep reading and writing on forums. I'm sure there is a thread here about those who do well. I've been reading some for letrozole.
Most of the countries that I go to are developing so they don't always have lots of money to spend on gifts. It's also usually hot where I am in December too. However, many of the people can be seen with Santa hats on and they sell some little fake trees in the market. They do have Christmas meals with family and church services. The good thing about being overseas is that people who work usually get many days off around the holidays. It's not just a one day affair like here.
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Good morning. mocame & kamboka. I think we are the only 3 left. I am healing. The new skin is very white with no pigment. Looks a bit strange. I have the PET scan Weds.
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petite1: It does feel strange not to have several messages a day on this thread. The new skin layer always looks 'new', to me. When my hands and feet peeled, it was nasty for a few weeks but afterward, the skin was so nice, pink and soft. My radiated breast looks that way now. I hope that's what you are seeing in your skin.
My tape allergy areas are trying to heal. I must remember the next surgery to never let them put tegraderm on my skin. Even my blue hypoallergic tape caused problems. I also used a foam tape that took off a little layer of skin too. Thankfully now, I don't have to cover it to wear my clothes.
We'll be on standby to see how the PET goes. Will you get the report immediately?
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Hello! It sounds like all of us are in the healing process. My skin is mostly tan with a few patches matching my normal skin color. I tend to keep a tan very long so I expect to be tan for awhile. I still have some tan lines from July before all of this cancer stuff started again.
Petite1 - I hope your PET scan goes well.
Kamboka - I'm glad your allergy areas are healing. Do you have another surgery planned or was that a reminder for any potential surgery in the future?
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mocame: It's just a general reminder. I should have remembered the skin reaction from when I had my port put it but didn't recall it being that bad. I'm not sure what I'll keep my dressings on with but I'll worry about that later. One would think that the hospitals would have something since there are quite a few people with adhesive allergies.
I think I might have been tanned but most of my skin peeled within the two weeks after radiation. Other than where I tore off the skin with tape, it didn't hurt and looks good now.
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mocame, kamboks, PET scan finished. I should hear the results today or tomorrow. Hope you both are healing well. It is a slow process, but I think our skin will be OK.
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Petite1 - Glad you got that done. Let us know when you find out the results.
Best wishes!
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petite1: Hoping you get good results back tomorrow. I know it's always anxiety inducing days leadig up to these scans.
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Hi, Ladies. I am cancer free. YAY!!!!!!!!!
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