Starting Radiation October 2019
Comments
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mocame: I guess we are our own best detectives. It sounds like you are on to something. Since I don't have the bolus, I'm not sure exactly how that works. Maybe they can get a new set up with 'real' tape so that they don't have to do the rigged system that might be causing undue pressure on your arm. We'll see what the RO thinks.
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For those of you that don't have to use the bolus, it basically is a white piece of soft plastic with one side that is sticky. They keep it cold, and they peel a clear plastic sheet off the sticky part and lay the bolus on the area being radiated. It needs to completely mold to your skin. It is made specifically for each person and is reused each time (every other treatment). The purpose of the bolus is to keep the radiation close to the skin and not toward any organs. They line you up for the radiation and then place this cold piece of soft plastic directly onto your skin and mold it to your body...and you can't move when that coldness hits you!
For me, they have to move it a bit in between doing the two different angles. The stickiness of the one side wears off after awhile. So they take long pieces of tape and go completely across my body and attach it to the table on both sides of me. That keeps the sides down. Then they take another long piece of tape and wrap it around my bolus-covered boob to keep the bolus close to the skin. And then any smaller pieces of tape needed to keep any other ends down get attached to me. Fun times. #17/30 done. 8 more regular treatments and 5 boosts left. Can't wait!0 -
How did everyone's treatments go today?
Kamboka - How was your appt with your MO?
#18/30. Met with my RO today. They think a nerve is being pinched during treatment which is causing the tingling and numbness in my arm/shoulder and are referring me to a OT to get exercises and help to get through the rest of treatment. Kamboka, aren't you going to an OT?So far they are pleased with my skin. The skin under my arm is probably the worst and the bright pinkness just popped out a couple days ago. They were surprised I haven't had any fatigue yet. I've had just a couple zingers the past day or so but that's it.
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mocame: Perhaps we are supporting each other not to get fatigue. People are amazed that I don't have it yet, too.
Thanks for explaining the bolus. I was thinking it was a tiny device that they put on you. I have a breathing device that they put on my stomach each time. Do you get to keep the bolus after this is over, since it's custom made?
#22/30 today. I went in early to rads today. When I walked in the receptions almost laughed at me when I said I had been moved up since they had a room full of folks waiting. Anyways, in about 10 minutes, a technician came out to get me. He laughed and said that the others in the waiting room were probably wondering why he got me first. He actually ended his lunch break early to work me in. These folks are so nice and I will miss talking to them each day.
I saw my MO today. She was very pleased with my skin and the fact that I was doing well, except for the neuropathy. I had my questions lined up to ask her. I wanted to know about getting markers and/or scans done in the future. She is not a MO that likes either. She keeps saying if there are new symptoms. I already have symptoms that are pulmonary and bone so not sure how this will work. I also read in some of the MBC threads that some ladies didn't have any symptoms. I guess, I'll either go along with that plan or find a new MO next year. I'll start on Femara after rads. She is thinking ten years but I said seven was shown to be just as effective--that is--if I can even get to seven. We are planning on taking the port out at the end of November.
I saw another OT today. This lady was great. She did the manual massage for almost 45 minutes. My main lady only does about two minutes and them makes me do my exercises. I get this lady again in two weeks so am looking forward to it. She was very impressed with my range of motion and said my skin looked great.
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Kamboka - Your rads group sounds like a great group of people! As far as your MO, if you already have symptoms why wouldn't it be checked to be on the safe side? I haven't met with my MO again yet. That is the week after rads ends. I'm supposed to go on Zoladex and Arimidex for 10 years but I have heard about the 7 year being just as effective and want to shoot for that.
Did you have your OT before rads started? That sounds like something everyone should be having but nothing was mentioned to me about the OT until my pinched nerve.
How are everyone else's treatments going?
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mocame: I would not have been started on OT if I had not brought it up with my breast surgeon on my follow up visit. I had read about doing OT/PT to help or prevent lymphedema from this forum. Otherwise, I would not have thought of it either. I did about six weeks before I started rads. It has helped.
My MO is only looking at the three AIs for me. She said she's had more luck with Femara than the other two but if I have problems she will switch me to the one that is not the sister drug to Femara (I forgot which one).
petite1: Are you feeling better?
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Good morning. 5 down and no more problems since last week. I met with RO yesterday and nothing new to report. Hope all is well with everyone.
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petite1: Good to hear that you are doing better.
Thank goodness it's Friday. I look forward to resting over the weekend. My work load has increased since they all think I'm 100%.
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Petite1 - Great to hear you are doing well. I hope the rest of your treatments are the same and they fly by!
Kamboka - I know the feeling about the workload. I have been so busy the past few weeks that I don't know how they would've done it if I would've had fatigue and couldn't work. Another rads week done! Yay! Are you having boosts done for your last treatments? I think you told me but I don't remember. I hope you get to relax and enjoy your weekend!
Next week is supposed to be my last week of regular treatments and then the last week is supposed to be boosts but nobody has said anything about the boosts yet and I was wondering if there is a special setup process for those? Does anyone know? I don't have any extra time built into my schedule that I know of for any special setup/markings, etc. I'm now done with #20/30. I'm overall just pink with the area under my arm being the worst. I haven't received a phone call yet from OT to set up an appt and at this rate, I might just stick to the exercises I got from the September rads thread. It's been okay the past day or two.
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mocame: I had a pleasant surprise today. They said they didn't have to shoot my clavicle area so only two beams instead of the normal three. I have one more full breast and underarm on Monday and then start my five boosts. I did ask them if I had to do x-rays before the boosts and they said 'yes'. I think it should go fast since it's just one shot. I'm not sure if I have to still hold breath or not. At this point, it doesn't matter since I've done really well with the breath holding. Before this all began, I didn't think I could do it.
I did acupuncture today. I want to start massage soon. I've held off since I'm taking a blood thinner and have my port. The last massage therapist said he didn't want to do my lymphatic massage d/t those reasons. I'm supposed to have the port taken out in a few weeks. The MO is recommending me to have it done in interventional radiology instead of the OR. All I know is that I need to have sedation and not just local. I do have a problem though as I don't have anyone to come to get me discharged afterwards. My only friends here are my work colleagues and they will be at work!
You are close to the end. I hope your skin under the arm can hold up a bit longer. We also have to worry about the weeks after we end as well. I'm going to keep using my lotions/potions for weeks afterwards.
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Good morning. 6 treatments down and doing OK. Still have discomfort from the arm pit. Glad I am retired and the work load is the one I create myself. LOL
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Petite1 - Keep marking those days off the calendar! I'm glad you are doing ok. Is the discomfort any better or just the same? I wish I could be at home but I finally got full-time at the beginning of the year and I carry the health insurance for the whole family. I have to keep the $ rolling in and the insurance coverage going!
Kamboka - I'm glad you only have to do 2 beams now and only one regular treatment! You are so close! I keep hearing here and from other people that are going through radiation for other types of cancers that the radiation keeps effecting you weeks afterwards. I too want to keep doing the lotions for awhile afterwards, especially since I have an implant.
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Good morning. 15 more RADS to go. Hope everyone had a nice weekend.
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Well, I had #21/30 done. But today was not a good day and it doesn't have anything to do with radiation. I woke up this morning and the world was spinning. I was really dizzy and then I had some intestinal/stomach issues. No fever. I didn't go to work and pretty much layed on the sofa all day. My parents took me to radiation and when I told them I wasn't feeling well, they had me see one of the RO nurses. She took my vitals and everything was okay except for my blood pressure. 161/97! Oh boy! I have no idea why it is so high. They told me it has nothing to do with having radiation but I should get it checked out.
Question - Has anyone experienced getting sudden hot flashes since your radiation treatments started? I'm usually a very cold person but since I started radiation (could be a coincidence), I have had some hot flashes. Some days more than others. I'm premenopausal and never had them before.
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mocame, I had dizziness, but it was due to a UTI and dehydration. B/P was low. Did you get to see a doctor today?
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mocame: You did have an eventful day. Sorry you weren't feeling well. I've had a few hot flashes but nothing really bad. I am post menopausal and didn't really have a hard time with flashes during menopause. The chemo did not really cause flashes either. Sounds like you've never had a problem with your BP. Are you on any other medications? I had some really low and then high BP reading during chemo and after surgery. My Primary started me on another BP med and it has seemed to help. Do you have a home BP machine? If so, take it several times a day and get some trends to share with the doctor. Hopefully, it was just a one off that was due to the GI problem.
petite1: Only three more weeks for you. That's great.
I had my final full breast and underarm treatment today. Only five more to go and they are boosts!
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Kamboka - Yay! You graduated to just boosts! I am on bp medicine now but it's a low dose. This summer my bp was 110 - 120+ and not a problem. I know dealing with this 2nd round of cancer has been stressful but I have handled it pretty well so far considering. Kamboka, Is your skin still pink/tan? Your skin seems to have done great!
Petite1 - I called my pcp office when I got home and set up an appt on Wed. to go over different things that I have been experiencing but they say isn't radiation related. I'm switching to another dr as my PCP. I want to have a female dr that will help me and will be on top of my health stuff as I transition to the meds and also with my obgyn as I consider an oophorectomy. The woman I talked to to setup my appt told me she started radiation today where I am having it done. Small world. Congrats on only 3 weeks left!
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mocame: This treatment makes our bodies do strange things. This year, I've had to change BP meds four times, after using the same med for at least five years without problems. I've gone from the lows of 80s over 50s to highs of 180s over 100s. I'm stable now--thankfully. I still have problems with my O2 levels falling, even after starting on the CPAP machine. I've had a cough off and on so not sure if its related to my past pneumonia or the CPAP. I'll see my PCP right before Thanksgiving. It takes between 4-6 months to get an appointment with her. I'm making a list of issues to discuss with her.
Today was my doctor check. He and the NP are very pleased with my skin. The NP did caution that the skin could still peel even though I've finished the full breast shoots. She says under the breast and under the arm are the most vulnerable. I think my neck is more noticable than the other two areas. Part of the problem is that I forget and wear my work lanyard and it rubs against that sensitive skin.
I am seriously thinking about getting a second opinion at another hospital just to see about my follow up care. I've just read a post a few minutes ago about someone who had no pain but was diagnosed with bone mets. I ordered myself the CA 15-3 test and went today to the lab and had it drawn. I know it's mostly used to follow mets but it can also show if things are elevated. If so, I need to have more tests to see if there is a trend. I hate to be my own doctor.
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Kamboka - We need to be our own doctors/advocates, unfortunately. Sometimes I feel like just a number but we know our bodies the best. We just don't always know what to do about it. Did you have a PET Scan done when you were dx?
It sounds like your skin is in great shape and the SEs are minimal. Still no fatigue or any other issues?
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mocame, I hope you are feeling better. I hate changing doctors, but sometimes it is necessary. I have known my doctor for about 25 years, but he has only been my PCP for about 2 years. I have had some of my doctors for so many years, they are going to start retiring and then I will be searching for new ones. LOL
kamboka, I am glad your skin is doing well. I broke out in a rash on the radiated breast. It is different from my Lupus rash. They gave my RadiaPlex Gel. The rash cleared up over night, but this stuff has alcohol and chemicals in it. I prefer Aquaphor.
Seeing RO today.
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petite1: I'm surprised they gave you something with alcohol in it. Maybe you can just use what has been working for you. I've only used mixtures with calendula oil. One cream I have as that with aloe and some other natural things. The other mixture, I made myself with calendula oil and coconut oil. I swear by coconut oil.
mocame: I had fatigue a 2/10 yesterday but I seem to always be slower on a Monday. In fact, today, I can already feel that I have more energy. I'm really happy about the fatigue because I was expecting it to be like my chemo fatigue. I didn't have a PET. They did a CT scan and bone scan. This was done in February before I started my neoadjuvant chemo. With my bone and joint problems, I'm hoping to have another scan but the MO doesn't seem to think it's necessary. I think my insurance will cover it as they have been good so far. Perhaps, because this is an inner city hospital with lots of folks not having insurance, she is trying to save money. I really like the other hospital that I might go for the second opinion but it's farther away from where I live. I have to pay about $20 each way to get there now for my OT/PT. I guess I have to wait six months before doing the mammograms because of rads.
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Petite1 - I'm surprised too that they gave you something with alcohol in it. I use just Aveeno naturals lotion and Aquaphor at night. When the spot under my arm started getting really pink, I put some Aquaphor on it and it burned the first time. My RO nurse said if it burns again, to just use the lotion and it would be fine. It hasn't burned since so I'm sticking with the Aquaphor at night for it. I hope your rash is gone for good.
Kamboka - Mondays seem to be my harder days too but, like you, still not bad. If you have bone and joint problems, I'm surprised they are giving you an AI and not Tamoxifen. That is the biggest complaint I hear about AIs.
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mocame: I called the other hospital to try to make an appointment but they only had an answering machine. Hopefully, they will call me back tomorrow. I picked up my script for the Femara but honestly I don't plan to take it until January. I will be traveling in December and don't want to feel bad.
Today, I had my final x-rays for the boosts. I didn't have to hold my breath and they took more angles. When they drew on my skin, it seemed like they were shooting the lymph node. I didn't notice until I was dressing. I asked one of the technicians as I was leaving and he said they were shooting the breast but the angle was through the nodes. Still doesn't make sense to me so I'll ask again tomorrow. The RO definitely said that I only had to get the breast tumor bed shot and not the node.
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Kamboka - I know what you mean about not wanting to be on the AI when traveling. I'm traveling next May and I'm wondering if my MO will let me take a short break during that time but she seems more rigid and by the book, so I doubt she will let me.
Hmm. I was told boosts are just for the spot of the tumor, not anything else. Maybe the best angle was through the nodes? Can that be?
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mocame: I'm not telling my MO about not starting Femara until I see her again the end of January. She knows I'm pretty much a naysayer. I had refused to take taxol, then took taxotere, stopped that after one bad reaction, started back on taxol and then stopped again after the neuropathy. I think I sometimes frustrates her but I really want quality of life. If I didn't have neuropathy now, I'd not really know I had chemo and cancer. Everything else seems to be back to normal, although, I don't know what the other long term complications might be.
I will definitely ask the other technician tomorrow about why they seem to be targeting my incision area around the node. The one for the breast is almost hidden. Surely, they didn't make a mistake!
I guess if you are not having any symptoms, it won't be a problem in May. Let's hope that that is the case. I, too, might be doing some international longer term travel in mid 2020 so am hoping that I don't have major symptoms. I do worry about the joint/bone pain since I already have some of that.
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kamboka & mocame - I stopped using that gel as soon as I saw it had alcohol. The rash came back after radiation. It is still there. I think I see the RO today. I have a Medicare advantage plan and have 20% copays until the out of pocket fees are meet. It will be met about the time the new period starts, so what good is it. LOL The cancer center gave me a discount for paying for all the co-pays up front. Big credit card bill this month. I hope they don't have to treat your armpit. I would think if there was no cancer there they shouldn't have to. My armpit still hurts and surgery was Aug. 24.
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9 down 12 more to go (including the 5 days of just the wound)
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petite1: Health costs are crazy. I'm blessed at the moment to have a good work plan. That's why I forced myself to go to work everyday, except during hospitalization, so I could keep my job. I needed the job for the insurance. I've had heath care in other countries and we are one of the most expensive places. It's not always better quality either. It looks like you didn't have any positive nodes, so they shouldn't have to do the underarm, I'm thinking.
I have three more boosts. Everything was going well until today. I had promised the technician yesterday that I would not rub off the marks. I'm allergic to the tape they use, so when I got home, I used my hypoallergenic tape. I showered this morning and then replaced the tape. When I got to the center, I pulled off the tape and also part of my skin in two spots. Ugh. The technician gave me some Skintegrity to use.
I also was able to ask about where they are doing the boosts since it looked like where the nodes were. They called in the RO and he took me to his office to show me the CT scan where my areas are. Apparently, my lump was at 3 o'clock but because my breasts have fallen and I had a reduction years ago, it looked like the wrong place. The RO said the Surgeon put the scar near my old reduction scar for aesthetics but my lump was further up my breast.
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kamboka, My lumps (2) were in the left upper quadrant of my left breast, just over an old scar from a lumpectomy many years ago. It is very close to my armpit. Sounds like you have a good RO and team.
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I have to work too because of getting good insurance. Up until this year, we had Obamacare and the only plan available didn't include my BS, my PS, or the whole hospital. Now this year, I was able to get insurance at work for our whole family. Needless to say, it came just in time. I knew our healthcare was expensive compared to other countries but I didn't know how the quality compared.
Kamboka - I'm so sad that happened to your skin. Your skin is in such great shape! You are so close!
Today I had my setup for boosts next week. I got marked with a circle and stickers. I'm not supposed to put a lot of lotion on my boob so that the stickers don't come off. How do I keep the skin in good shape then? They told me I can expect it to get worse in 2 weeks after. The RO nurse said that someone called her recently that hardly turned pink by the end of treatment. A week after treatment ended, her skin opened up and got weepy. Ugh!
Met with another family dr this morning. I explained everything going on and what I've been experiencing lately. She ordered a bunch of bloodwork and I got the results online this afternoon. There were 3 things that showed up abnormal. She hasn't called me about them yet so we will see what she says.
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