Deleted
Posts: 0
Oct 5, 2024 1:25:45 GMT
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Post by Deleted on Jun 26, 2023 13:21:55 GMT
I am reaching out just to see how your journeys went.
As most of you know, I had SBRT for a posterior fossa meningioma. The surgery removed 40% of the tumor, but I had to have radiation treatments to stop the growth. Any shrinkage at this point is just a bonus. Just don't want any new growth. It's still about 3 cm.
After the surgery but before the radiation. I felt good. Really felt so much better. I had a three month period between surgery and the start of the radiation. Now, I am well aware that radiation does not make you feel better, but damn, I feel so unwell. Most of the time I feel unwell, if that makes sense. The fatigue is no joke! I can manage maybe one big thing a day...like meeting a friend for lunch or maybe cooking a meal. But I can't do both without it really zapping me and having to lay down for hours.
The kids end of school year activities really have been hard. I had a couple of very busy days. My balance has mostly stayed intact but I have random episodes where I will become tipsy (not dizzy). Extreme fatigue will bring it on pretty quick.
Just trying to get a feel from others that have gone through radiation, just how long did you feel poorly or how long did it take to get on the upside of it?
It's just such a struggle not feeling like myself.
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Post by revirdsuba99 on Jun 26, 2023 13:40:35 GMT
Sorry, I can't help with info on the radiation.
However I can understand the difficulty trying to explain the tipsy v dizzy. Unrelated to your situation I was in the ER with a medical emergency and they kept asking me if I was dizzy... No no I said it was different, not dizzy, not light headed, just different...
Wishing you the very best!!
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gsquaredmom
Pearl Clutcher
Posts: 4,091
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jun 26, 2023 13:50:11 GMT
Radiation is brutal. It is hell. I had surgery for tongue cancer a year ago, then 35 radiations on my mouth and neck from Aug 1-Sept 15. It wrecked me. I slept as much as 16 hours a day. I could not keep up with the protein and calorie needs because my mouth was one big blister and for a couple weeks I was losing a pound a day. Not good. My body robbed protein from my muscles and hair follicles. I lost strength and ultimately was too weak to walk. I fell down stairs. I lost my hair. When my FMLA ran out I went back to work as a teacher with a walker and wore scarves. I have gained weight because I lost so much muscle mass and don’t metabolize as efficiently (being 57 does not help). I now have short curly hair and am rebuilding my strength. I will start PT next week for reconditioning to strengthen. Always share your concerns with your doctor. You should be told what to expect and you should have a nutritionist. They have seen it all and can help you manage. Be kind to yourself. Your body is being bombarded with radiation and is trying to cope. You will feel awful. And then you will recover. I wish you the best on your journey.
ETA. And the tipsy not dizzy? Yes, absolutely. Still dealing with it. I think part of it is due to my muscle weakness and I need to relearn the fine points of keeping balance. The other part, I don’t know— it’s like my awareness of my position is slightly out of phase or something. It’s getting better as I take more walks and work on strengthening.
ETA. I am still shocked by how long this is taking to fully recover from all of this.
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Post by librarylady on Jun 26, 2023 13:58:45 GMT
DH had 42 treatments and was so tired he could not do much of anything by the time it was over. He doesn't remember exactly when he got his energy back but in a few weeks he began his morning walks (1/2 mile) again.
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Post by paulao on Jun 26, 2023 14:03:10 GMT
I had 35 treatments for DCIS. Five times a week for 7 weeks. I continued working throughout because the treatment center was across the street from work. By Friday each week I was exhausted. The mental toll is real in addition to the physical toll. I wish you good luck and good health.
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Post by mikklynn on Jun 26, 2023 15:03:46 GMT
My late DH had 5 treatments on his femur and hip. It wiped him out! I still don't know how my BFF got through 35 treatments.
Don't overdo it. Take the time your body needs.
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Post by stampnscrap1128 on Jun 26, 2023 15:15:24 GMT
I had 30+ radiation treatments in 2020 for breast cancer. Big time fatigue for the first couple of months. Then my husband was diagnosed with ALS 2 months after I finished surgery and radiation. So I had no choice to but just power through the fatigue as I was his caretaker. After he died in 2021, my body said ok, time to resume the fatigue. It's better now. I have noticed my teeth are more fragile due to the radiation so I am careful in what I eat. Best wishes on an easy radiation time!
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Post by JoP on Jun 26, 2023 15:34:14 GMT
I had 10 doses of radiotherapy for a secondary breast cancer tumour in my spine. Yes it is brutal, exhausting, and the fatigue is dreadful. I still get days, 16 months later, that wipe me out and I have to rest. Doing one thing a day is absolutely fine, don’t beat yourself up about not doing more. Rest as much as you can/need just listen to your body. I know it is frustrating not being able to do what you want, but pushing yourself too much may hinder your recovery. Sending you lots of love, you’ve got this
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Post by KelleeM on Jun 26, 2023 16:21:56 GMT
I had 38 radiation treatments after my lumpectomy and chemo for breast cancer in 2014. I still remember the absolute exhaustion I felt. I guess I should be grateful that I had horrible burns and was able to stay out of work for the last two weeks. I spent that time sleeping and on the couch after taking pain meds.
I hope you feel better soon but please, listen to your body and rest!!!!
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uksue
Pearl Clutcher
Posts: 2,530
Location: London
Jun 25, 2014 22:33:20 GMT
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Post by uksue on Jun 26, 2023 16:28:48 GMT
I agree radiotherapy is awful. I had it following cervical cancer. Initially it was ok, but once they started giving me chemo prior to the radiation to heighten the effect I had such a toxic reaction they stopped me at treatment 18 ( of 25). I was not only exhausted but had awful diarrhoea ( sorry tmi) which got worse and worse . It continued to worsen for 2 weeks after they stopped my treatment, I then gradually felt better over about 6 weeks. One of my friends had a very different experience following breast cancer however. She had dreadful burns in her irradiated area, but continued to feel well and carried on working all the way through.
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Rhondito
Pearl Clutcher
MississipPea
Posts: 4,797
Jun 25, 2014 19:33:19 GMT
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Post by Rhondito on Jun 26, 2023 17:04:04 GMT
I had 36 rounds in 2020 after my lumpectomy and chemo. I really didn't have any problems with it. I was able to work, ride my bikes, and do most things as normal.
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Post by nine on Jun 26, 2023 17:16:46 GMT
I had breast cancer 30 years ago. I was totally surprised at how radiation affected me. Tired beyond belief. I basically took a 6 month nap.
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Post by scrapcat on Jun 26, 2023 17:29:18 GMT
I had 36 rounds. I felt fine during, but about a month later the fatigue caught up with me. I was back at work full time after the pandemic also, and I remember just working and coming home and going to bed. I would say took me about 3-4 weeks to get thru it. I feel like your situation could be more effective, because of location. I would imagine the mental fatigue of the whole diagnosis could also be catching up? It took me a year after treatment was over to even have the mental/emotional capacity to begin healing. And that process is ongoing. I would encourage any kind of retreat you can find or any organizations that offer complimentary therapy to combat side effects and help you work thru it. Hang in there!
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Post by missmcd on Jun 26, 2023 17:41:38 GMT
I completed six weeks of radiation in 2020 and I don't remember crazy exhaustion but I also already felt exhausted from six months of chemo, a pandemic and caring for three small kiddos. Cancer sucks. The thing I can say with confidence is, I feel better now. It takes a lot of time, and I still feel like when I do get sickies from family/kids it hits me harder. BUT I'm here and for that I am forever grateful! Sending you lots of love and healing vibes. You can do hard things!!
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Post by quinlove on Jun 26, 2023 17:42:11 GMT
((( allipeas ))) I have no knowledge about this. I am sending healing hugs to you. 🩷
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RedSquirrelUK
Drama Llama
Posts: 6,899
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
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Post by RedSquirrelUK on Jun 26, 2023 22:26:00 GMT
I had chemo for breast cancer and that was fatiguing, but not radiation therapy. My Mum had radiation, just 5 sessions daily for a week. She was pretty tired but it was a 40 minute drive each way which is tiring in itself at 86.
One of the things that surprised her was that other than the tiredness, she felt pretty good at the time, but the treatment was cumulative and just as she was thinking she'd got away with it, the fatigue and burns hit. It takes a while to get back to whatever now passes for normal.
Hugs. Things will improve for you, but it could take longer than you think.
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Nanner
Drama Llama
Posts: 5,987
Jun 25, 2014 23:13:23 GMT
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Post by Nanner on Jun 26, 2023 22:39:12 GMT
I have no advice about the radiation thing, but I encourage you to accept help from anyone who offers it to you - whether it's cooking means, cleaning, shopping, etc. I hope you get feeling back on track very soon.
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sueg
Prolific Pea
Posts: 8,416
Location: Munich
Apr 12, 2016 12:51:01 GMT
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Post by sueg on Jun 26, 2023 23:49:16 GMT
Radiation therapy wiped me out. I had about 20 sessions starting 6 weeks after breast cancer surgery, thankfully no chemo needed. My appointments were usually around 10 am and when I got home I was done for the day. I mostly sat on the sofa and binged mindless TV shows - even reading and knitting were too tiring.
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Deleted
Posts: 0
Oct 5, 2024 1:25:45 GMT
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Post by Deleted on Jul 1, 2023 15:41:48 GMT
Radiation is brutal. It is hell. I had surgery for tongue cancer a year ago, then 35 radiations on my mouth and neck from Aug 1-Sept 15. It wrecked me. I slept as much as 16 hours a day. I could not keep up with the protein and calorie needs because my mouth was one big blister and for a couple weeks I was losing a pound a day. Not good. My body robbed protein from my muscles and hair follicles. I lost strength and ultimately was too weak to walk. I fell down stairs. I lost my hair. When my FMLA ran out I went back to work as a teacher with a walker and wore scarves. I have gained weight because I lost so much muscle mass and don’t metabolize as efficiently (being 57 does not help). I now have short curly hair and am rebuilding my strength. I will start PT next week for reconditioning to strengthen. Always share your concerns with your doctor. You should be told what to expect and you should have a nutritionist. They have seen it all and can help you manage. Be kind to yourself. Your body is being bombarded with radiation and is trying to cope. You will feel awful. And then you will recover. I wish you the best on your journey. ETA. And the tipsy not dizzy? Yes, absolutely. Still dealing with it. I think part of it is due to my muscle weakness and I need to relearn the fine points of keeping balance. The other part, I don’t know— it’s like my awareness of my position is slightly out of phase or something. It’s getting better as I take more walks and work on strengthening. ETA. I am still shocked by how long this is taking to fully recover from all of this. I did ask prior to my treatments, what the side effects would be. Here in Morocco, they don't hand out pamphlets with information or tell you what to expect. They actually told me the side effects would be minimal. It's very typical here that doctors and families maintain the attitude of "don't scare" the patient. It really distresses me how they can be so elusive on details. I have been very fortunate to have found a NS who is more modern in thinking and indulges all my questions and will explain in as much detail as I want. The radiologist/oncologist, not so much. They don't have a nutritionist either. So I am pretty much navigating this along. When I had the seizure due to the brain swelling, it was my NS who prescribed the high dose injection of steroids. We hired a private nurse to come give me the injections over the three days. It blew my glucose levels out the barn roof. It went as high as 480 one day! I get soooo tired of being tired. DH has just been so awesome and he is the one that encourages me to rest. And for the most part, everyone is understanding. But they will make comments about how I am "healed" and to be more energetic. I think this is because I don't "look" sick. You can't SEE the brain tumor. You can't SEE the radiation. Does that make sense? I feel like I am being whiny today. It's not been a good few days...headaches and just I cannot seem to recharge my battery. I am hoping like hell that magic will happen and the clouds will clear by the time they get here and I will have all the energy to enjoy them. I really, really appreciate all you peas walking with me on this. It helps to talk to those who have been on the "inside" of my head! LOL
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Post by withapea on Jul 1, 2023 16:48:52 GMT
I’m really sorry. Radiation is draining. I had mine while I was still pretty sick and it helped my pain a lot, but it was a mixed bag. I’ve been dealing with fatigue the entire time I’ve had cancer. It really is frustrating and difficult. I’m tired all the time, even when I’m feeling pretty well. My cancer is currently controlled but I have a lot of side effects, fatigue being a big one. Like you, I don’t look sick. You wouldn’t see me and think “cancer patient”. I wish I had some words of wisdom or a quick fix. I don’t, but I can tell you that I get it. Be kind to yourself. Try to ignore the outside chatter, easier said than done, I know, but don’t waste your energy on it.
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gsquaredmom
Pearl Clutcher
Posts: 4,091
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jul 1, 2023 17:26:54 GMT
Radiation is brutal. It is hell. I had surgery for tongue cancer a year ago, then 35 radiations on my mouth and neck from Aug 1-Sept 15. It wrecked me. I slept as much as 16 hours a day. I could not keep up with the protein and calorie needs because my mouth was one big blister and for a couple weeks I was losing a pound a day. Not good. My body robbed protein from my muscles and hair follicles. I lost strength and ultimately was too weak to walk. I fell down stairs. I lost my hair. When my FMLA ran out I went back to work as a teacher with a walker and wore scarves. I have gained weight because I lost so much muscle mass and don’t metabolize as efficiently (being 57 does not help). I now have short curly hair and am rebuilding my strength. I will start PT next week for reconditioning to strengthen. Always share your concerns with your doctor. You should be told what to expect and you should have a nutritionist. They have seen it all and can help you manage. Be kind to yourself. Your body is being bombarded with radiation and is trying to cope. You will feel awful. And then you will recover. I wish you the best on your journey. ETA. And the tipsy not dizzy? Yes, absolutely. Still dealing with it. I think part of it is due to my muscle weakness and I need to relearn the fine points of keeping balance. The other part, I don’t know— it’s like my awareness of my position is slightly out of phase or something. It’s getting better as I take more walks and work on strengthening. ETA. I am still shocked by how long this is taking to fully recover from all of this. I did ask prior to my treatments, what the side effects would be. Here in Morocco, they don't hand out pamphlets with information or tell you what to expect. They actually told me the side effects would be minimal. It's very typical here that doctors and families maintain the attitude of "don't scare" the patient. It really distresses me how they can be so elusive on details. I have been very fortunate to have found a NS who is more modern in thinking and indulges all my questions and will explain in as much detail as I want. The radiologist/oncologist, not so much. They don't have a nutritionist either. So I am pretty much navigating this along. When I had the seizure due to the brain swelling, it was my NS who prescribed the high dose injection of steroids. We hired a private nurse to come give me the injections over the three days. It blew my glucose levels out the barn roof. It went as high as 480 one day! I get soooo tired of being tired. DH has just been so awesome and he is the one that encourages me to rest. And for the most part, everyone is understanding. But they will make comments about how I am "healed" and to be more energetic. I think this is because I don't "look" sick. You can't SEE the brain tumor. You can't SEE the radiation. Does that make sense? I feel like I am being whiny today. It's not been a good few days...headaches and just I cannot seem to recharge my battery. I am hoping like hell that magic will happen and the clouds will clear by the time they get here and I will have all the energy to enjoy them. I really, really appreciate all you peas walking with me on this. It helps to talk to those who have been on the "inside" of my head! LOL I had to drink three Ensure Completes each day to try to get enough nutrition. It still did not suffice. You do need to be your own best advocate. I’m glad you found one person who is helpful, at least. It was frightening to try so hard but keep losing weight. It is crucial that you get enough protein. I lost a lot of muscle. I start Pt next week to learn how to try to recover it safely. It truly is astonishing to me that a year later I am still trying to recover. I have always been pretty healthy and bounce back pretty quickly, but not this. I think I am changed forever in many ways and am trying to claw back as much as I can. I still need to find a dentist who has experience with radiated jaws. My dentist is ok, but if so need extensive work at some point it would be good to have someone. Everything you are experiencing is part of it. And yes, I don’t think people really get it. And if they did not tell you that radiation keeps working for weeks afterward snd you can have side effects pop up months later, I am telling you now. I was looking through my phone at pictures. I cannot believe what I have been through in a year. It is absolutely true that when all you have left is strength, you are strong. I wish you all the best on your journey. You can and will do this. Feel free to reach out. ((((Virtual hugs ))))
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Post by mom on Jul 1, 2023 18:27:06 GMT
Radiation is brutal. It is hell. I had surgery for tongue cancer a year ago, then 35 radiations on my mouth and neck from Aug 1-Sept 15. It wrecked me. I slept as much as 16 hours a day. I could not keep up with the protein and calorie needs because my mouth was one big blister and for a couple weeks I was losing a pound a day. Not good. My body robbed protein from my muscles and hair follicles. I lost strength and ultimately was too weak to walk. I fell down stairs. I lost my hair. When my FMLA ran out I went back to work as a teacher with a walker and wore scarves. I have gained weight because I lost so much muscle mass and don’t metabolize as efficiently (being 57 does not help). I now have short curly hair and am rebuilding my strength. I will start PT next week for reconditioning to strengthen. Always share your concerns with your doctor. You should be told what to expect and you should have a nutritionist. They have seen it all and can help you manage. Be kind to yourself. Your body is being bombarded with radiation and is trying to cope. You will feel awful. And then you will recover. I wish you the best on your journey. ETA. And the tipsy not dizzy? Yes, absolutely. Still dealing with it. I think part of it is due to my muscle weakness and I need to relearn the fine points of keeping balance. The other part, I don’t know— it’s like my awareness of my position is slightly out of phase or something. It’s getting better as I take more walks and work on strengthening. ETA. I am still shocked by how long this is taking to fully recover from all of this. I did ask prior to my treatments, what the side effects would be. Here in Morocco, they don't hand out pamphlets with information or tell you what to expect. They actually told me the side effects would be minimal. It's very typical here that doctors and families maintain the attitude of "don't scare" the patient. It really distresses me how they can be so elusive on details. I have been very fortunate to have found a NS who is more modern in thinking and indulges all my questions and will explain in as much detail as I want. The radiologist/oncologist, not so much. They don't have a nutritionist either. So I am pretty much navigating this along. When I had the seizure due to the brain swelling, it was my NS who prescribed the high dose injection of steroids. We hired a private nurse to come give me the injections over the three days. It blew my glucose levels out the barn roof. It went as high as 480 one day! I get soooo tired of being tired. DH has just been so awesome and he is the one that encourages me to rest. And for the most part, everyone is understanding. But they will make comments about how I am "healed" and to be more energetic. I think this is because I don't "look" sick. You can't SEE the brain tumor. You can't SEE the radiation. Does that make sense? I feel like I am being whiny today. It's not been a good few days...headaches and just I cannot seem to recharge my battery. I am hoping like hell that magic will happen and the clouds will clear by the time they get here and I will have all the energy to enjoy them. I really, really appreciate all you peas walking with me on this. It helps to talk to those who have been on the "inside" of my head! LOL I am sorry you are having so many bad side effects. Please, please take care of yourself - even if others think you are all healed. YOU know you aren't and that is just going to take time.
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Post by Scrapper100 on Jul 1, 2023 19:11:05 GMT
No experience with this but hugs to you. I would say rest when you need to and listen to your body I haven’t had radiation but multiple surgeries and that was always the advice I was given. Also no two recoveries are the same and I would assume this is similar. Lots of prayers coming your way.
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RedSquirrelUK
Drama Llama
Posts: 6,899
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
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Post by RedSquirrelUK on Jul 1, 2023 20:26:38 GMT
I'm re-reading this (and bookmarking) with a new focus. I am likely to need radiation at some point after my surgery.
Sending you double hugs.
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Deleted
Posts: 0
Oct 5, 2024 1:25:45 GMT
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Post by Deleted on Jul 10, 2023 14:08:59 GMT
I'm re-reading this (and bookmarking) with a new focus. I am likely to need radiation at some point after my surgery. Sending you double hugs. I am soooooooooooooooooooo sorry to have not posted to you thus far. I am just MAD that it has come back. DAMMIT! Cancer can just go to hell!!!!! Rotten son of a bitch! Know that I am thinking of you and please PM if there is any support that I can provide you. The Peas are an awesome bunch!
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Deleted
Posts: 0
Oct 5, 2024 1:25:45 GMT
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Post by Deleted on Jul 10, 2023 14:10:10 GMT
Going for my first follow up post-radiation MRI tomorrow. Not really expecting much. Too early to expect significant changes yet. As long as the "big" bastard hasn't grown anymore...I'm good!
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RedSquirrelUK
Drama Llama
Posts: 6,899
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
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Post by RedSquirrelUK on Jul 10, 2023 15:38:40 GMT
I'm re-reading this (and bookmarking) with a new focus. I am likely to need radiation at some point after my surgery. Sending you double hugs. I am soooooooooooooooooooo sorry to have not posted to you thus far. I am just MAD that it has come back. DAMMIT! Cancer can just go to hell!!!!! Rotten son of a bitch! Know that I am thinking of you and please PM if there is any support that I can provide you. The Peas are an awesome bunch! This is actually a new primary, so it hasn't come back which is a good thing. And it's all been taken out successfully, they think. I get the histology results in a couple of weeks. Prayers and everything crossed for you tomorrow. I know it's early days, but radiation does work quickly. You're going to kick this!
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Post by lisacharlotte on Jul 10, 2023 15:58:27 GMT
Radiation for cervical cancer. Six weeks of once a week chemo and 5 day a week radiation. I also had 5 high dose internal radiation treatments. I worked full time only taking off Mondays because chemo/radiation days took all day. I made up as much time as possible working 9-10 hours a day Tu-Fr. It was brutal. Weekends I would lay down at noon and not wake up until the next morning.
Some unexpected side effects:
- radiation sunburn on my butt. My butt had never been so tanned. It eventually went away. But it was almost always tender like a new sunburn. - radiation burn of my urethra. Felt like the worst UTI ever and took weeks to go away. I ate those orange pills like candy. - hair loss, not on my head! The targeted radiation beam left a circular bald spot right in the middle of my pubic bone. - tiredness, it was so bad. Working to make up my time didn’t help, but working did help psychologically. It gave me something else to focus on. - sudden onset menopause and the hot flashes and brain fog and crazy emotions hit me hard and fast. - loss of appetite. Not sure if it was chemo, radiation or both. I wasn’t really ever nauseated, food just wasn’t appetizing. I also couldn’t tolerate coffee, so switched to hot tea. I didn’t lose more than 5 lbs because it was not allowed. I ate even when I didn’t want to.
My advice, when you’re tired sleep. Communicate with your oncology team. Nothing is trivial. They can either reassure you it’s normal or investigate if not. They might also have meds that will help in the short term. For example, those pills for UTI pain, I was taking way more than prescribed because the pain was miserable. I asked my doctor and he said it was fine to take what I needed to get relief.
Hugs to you!
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Post by auntkelly on Jul 10, 2023 16:12:30 GMT
Hugs to you allipeas and all the peas who are going through or have gone through cancer treatments.
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Post by Spongemom Scrappants on Jul 10, 2023 16:43:33 GMT
Going for my first follow up post-radiation MRI tomorrow. Not really expecting much. Too early to expect significant changes yet. As long as the "big" bastard hasn't grown anymore...I'm good! Fingers crossed for you!
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