Radiation April 2019
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Hi Guys,
I'm new, ok, so a shorter radiation course length might mean in fact I'm getting a stronger session of it? So, If she says a month instead of 6 weeks like my last doc then it means I get more intense in shorter time?
OK well that's good info. As well as the stick with one pure cream or oil. Like only aloe or only coconut oil. That way you don't need to wonder what you're having a reaction to I guess.
They'll be mapping me soon. Is mapping also a quick tumor check? Thanks again. Like I said I may be April start but more likely I will be May start. I don't see a May start radiation group yet. Thanks.
Radiation will be my main adjuvant. I'm TNBC meta-PLASTIC so the hormones etc don't work but it's also considered Chemo resistant. SO I did do one CHEMO session but all the research out there show's that CHEMO has no effect on mPBC. So I dropped out after one hard core TNBC dose AC session. I was signed up for dose dense like a pre-menopausal triple neg or a pre-meno HEr 2 + or something. No consideration that my tumor is considered to be CHEMO resistant other than well yes that is true but it's all we have and it might help. We just don't know definitively that there's NO effect. Your tumors too rare. I don't think 1% is rare but whatever, I was miserable, weighed the neurological side effects I was having with a hypothetical (probably magical thinking) 9% survival rate increase which dropped to 4% if I switched to GEN TWO Chemo. And was in fact likely ZERO. I even read a study where the CHEMO just seemed to piss the tumor off then the second dose with their new IMMUNOTHERAPY and it went away. And I'm like. No I can generate my own "magical placebo effect " without the neurological side-effects, throw me in the radiation chamber and I will imagine my own dragons and sunshine. Every morning with the rise of the sun. So there we go.
They do have that new drug therapy for my tumor. IMMUNOTHERAPY It's just approved last month, so in stage 4 treatment groups only right now. In 5 years it'll be the first line standard of care for my specific RESISTANT - to everything tumor. But I live today.
Ya know what my tumor isn't resistant to? RADIATION. So we'll zap the boob and hope it doesn't come back there. Then it's 50% never to be seen again and 50% popping up elsewhere. Then they say they'll ZAP that place too.
So it's rads for local recurrence and healthy living and positive thinking for avoiding mets (which are more common, and happen faster).
Anyone else here doing rads as a primary Adjuvant?Or as a primary Adjuvant? And what are these boosts?
I feel my reconstruct is REALLY important to get in before the rads.. I'm having some serious structural pain issues because it was just such a LARGE lumpectomy. The boob just never feels supported. I hear that gets worse with radiation as it will shrink the boob so more structural difference? IDK.
Waiting for the plastic surgeon to get me on his schedule. OFF to work,
I already have a skin rash (from CHEMO) I guess so the Dermos going to look at that today
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MPBC, I just had my mapping a few hours ago. It's a CT scan so the radiation oncologist can figure out what angles to take to hit the areas to be radiated. My nurse showed me some of the images, and they want to avoid things like your heart, lungs, and other things that don't need to be treated. It may be able to see your tumor, but that's not what the mapping is for. You lay on an inflatable mat that forms to your body so that you lay in the exact same position every day you go in. They also drew all over me with Sharpies and then covered those marks with clear bandages to keep them visible throughout treatment. Once the actual mapping was done, I talked with a nurse about side effects, what to do/not to do during and after treatment, etc. The whole appointment took about 2 hours. My RO will take the next few days to plan my course of treatment based on the images they took, and then will call me to set up when I can start, which could be as early as late next week. I hope your radiation totally obliterates your cancer!
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@fritz glad to hear you're moving along in treatment!
Do u still have cording ? I am still suffering from cording and scared the radiation is going to make it worse. My range of motion is good though but i can clearly see the cord and my insurance is Kaiser so PT appts are hard to come by.
We do not have inflatable beds where I go. Those sound cool! Reminds me of the water bed days in the 80s! Haha.
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Ugh, 3/20 today. This is exhausting. I didn’t think I would feel fatigued so soon. Or maybe it’s my imagination. Yawn
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Fracking can Proton Rads be useful to you?? The protons can be precidely programmed to release al energy into the targeted area of tissue or nodes. Might want to look it up.
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Rad # 5 - one week down. Glad it’s the weekend. I’m a little worn out. Hope to sleep good tonight.
Hope all of you are doing well and have a good weekend.
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here are the two creams I'm using. I'm only 7 in out of 25 so we shall see how they work towards the end.
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Sunocean, I do still have cording, but it no longer prohibits my range of motion. My PT was able to snap it in a few places, which released a lot of the tightness. I feel like I did before surgery, but I can still clearly see what remains of the cord in my armpit. My PT told me to be diligent in keeping up with my stretches through rads. My RO's nurse told me the same thing.
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Fracking hate cancer,
I admire your strength to find the treatment that works for you. I have been doing what was recommended (except I did refuse the last AC) and went directly to Taxol and completed chemo.
I had nipple sparring mastectomies instead of a lumpectomy because of my dense breasts. Initially they said my cancer hadn't spread to my nodes but when they examined the sentinel nodes it was found in 1 of 3. They had to remove my left implant and put in an expander because the silicone wasn't strong enough to withstand the radiation. I will have my final surgery late this summer.
Radiation is better than chemo but it isn't a walk in the park I'm on 20/33. Cancer treatment is hard but you will get through it.
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Hi I will be starting Radiation soon. I had my BMX on 4/2 and meet RO on Wednesday 4/16 to plan. Luckily the Oncology team also meets on Wednesday so RO will be brought up to speed on my case.
Any advise? Thanks
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Well, I made it through the first week! I am now 5/28. It is the drive that is the worst. I am an hour and twenty minutes away from my treatment center. That makes for 2 hours and 40 minutes on the road everyday. Yesterday, I left the house without having my sleeve and spent the whole trip down worried about what it would do for my arm to be without it that long and wishing I was close enough to go back and get it.
So far, I have no discomfort or pinkness to the skin. It seems strange to slather aloe on an area that doesn't seem to need it. My RO only recommends using pure aloe or Aquiphor. I hate how Aquiphor feels! The tech said Miaderm and I asked about the Lindi products because my PT bought me their radiation products. I am a walking confusion of products hoping that I make the right choice to keep skin problems at bay or minimal. With all the info and options how do you make the right choice?
I am glad for the break this weekend. I think I need it emotionally more than anything else.
Hope you all are doing well!
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Just my two cents. All I did was keeping plenty of aloe in the fridge. wet fresh gauze and place it on the area and let my skin soak the aloe. No aquaphor no miaderm needed for me.
Please get plenty of rest.
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Hi Girls!! Finished my 1st week if RADS on Friday!! Nice to have a break this weekend. No SE's Yet! Feel a little tired around 4:00 but don't think I'll attribute that to the RADS cause I had a really busy week! 10 treatments to go and 🙏🏻🙏🏻 For little to no SE's. Will continue to do my Zumba and Body Pump classes. Hoping that helps keep my energy level up. Hoping all of you are doing well... hang in there. We can do this!
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my radiation therapist told me I should refrain from working out during rads...smh! She said i can still walk and do light stuff but definitely no running or strenuous exercise since it can irritate the skin. any one else got told this? If i dont sweat while working out I dont feel like I worked out!!!
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Hi Sunocean,
I was told totally the opposite by my RO and MO. She said to try to continue to work out the same way I always have. This will help your energy to stay up. There are studies that show this to be true. She said the people that don’t work out actually are more fatigued.
I did a lot of research and everything I’ve read has said to continue to work out. I do both cardio and weight lifting. I do sweat 🤣 I Hope this helps.
XXOO
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Cindr --- Didn't get to start the day you did because after the setup on Monday they wanted me to come back the following Monday (tomorrow ) for another short setup and then the radiation will start on Tuesday. Glad you don't have any SE's -- You're doing the hypofractionated treatment -- aren't you? It's supposed to have fewer SE's. How long are the treatments? I can't remember if you are also scheduled for the boosts. Mine will be 15 days of whole breasts and 5 days of boosts. Glad your first week went well.
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And tomorrow we start Week Two. I am quite tired already. I had planned to continue to work out thought this, bit that’s not happening. At most, a simple walk is the max. At this rate, I might just skip the boosts.
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Hi Jessie,
Sorry you had a delay, but hang in there. Yes, I’m doing hypofractionated RADS. I’m only doing 15 treatments (3 weeks), no boosts. Then on to Femera 😢 My treatments are REALLY fast!! I’m doing DIBH and the actual time of the Radiation can’t be more than 5 minutes, probably less!!
You’ll do great. I’ve been told that SE’s don’t usually hit for about 2-3 weeks. Will see. Let me know how you’re doing.
Good luck tomorrow!!
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Hang in there Freebee. So sorry fatigue has set in already. Maybe you’ll feel better this week 🙏🏻🙏🏻 How many treatments are you having. I’m not doing any boosts, but I know everyone’s case is different.
I’ll say a prayer for you that your energy comes back. XXOO
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Starting week two of six. No problem so far. I did tons of yard work over the weekend, pausing to stretch stiff arm at risk for lymphadema, trying to balance getting full ROM and avoiding lymphadema. I have walked 3 miles every day through chemo and surgery except for week after drain removed. They say to be careful but no one said do nothing. I keep hoping for the best. (Actually I’m still waiting for them to admit it was all a mistake.
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Thanks Cindr. I am doing16 whole breasts and 4 zaps. Today will be 4 of 20. Feeling much better after a 10 hour snooze. Lucky I am able to work part/time form home.
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Cindr thanks for responding!! Its so frustrating how things vary from one office to the other. I may just be able to sneak in a run or two and not feeling guilty about it.
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Sunocean - You go girl! We all keep fighting! Once this is done, it will be done
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I was supposed to start radiation on April 8th. However, the CT I had for radiation planning showed irregularities with my lymph nodes. I had an ultrasound and sure enough, I need a biopsy.
The biopsy is scheduled for tomorrow afternoon. Each time I've had a biopsy, they found cancer.
I am worried that I will be diagnosed with another recurrence of cancer. I finished chemo in March; it appears the chemo didn't work.
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chantable I'll be keeping you in my prayers. Please keep us informed as to your biopsy
((hugs))
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Chantalbe - fingers crossed that it’s not what you think.
Rad # 6 - had to have another set of x-rays before my radiation treatment. Don’t know if this is a weekly thing or not. Will ask the RO tomorrow. The rad techs keep pushing me up towards the top of the frame so a small part ofmy head is resting on a hard bar on the table. They put a wash cloth there so it won’t bother me as much, but today it was really annoying. Will have to work at it so it doesn’t dig into my head so much.
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Chantalbe - Think positive! I know it is hard to do but there is HOPE! I had a NP, MO, RO and IRO all 98.9% convinced my cancer had spread to my liver. I had a CT, MRI and finally a biopsy. Up to this point, like you, each biopsy was positive for cancer. With everyone so sure this one would be too. I worried, cried and couldn't sleep.... results of the biopsy were negative for cancer. Hopefully your result will be the same!
Today was day #6 of 28. So far so good - Hope it stays that way! The machine I have for rads does a CT everyday to check positioning etc.... and then does the treatment. I like knowing that the margin for error is so small. The anxiety I was feeling going into this is reduced. The remaining concern is just how my skin will hold up. How often are y'all slathering up?
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Hi All!
Today was day 25/33. Luckily my skin is doing well, just pink. Last week I starting getting very tired (not the chemo exhaustion though). I either need 8-9 hrs of sleep at night or I do need a short nap during the day.
Cindr..my MO and RO gave me the same advise as your doctors...keep on exercising! Actually there is an article from Sloan Kettering about benefits of exercise during cancer treatment. this is the link https://www.mskcc.org/blog/what-are-benefits-exercise-during-and-after-treatment
Rosie-Red..my radiologist does weekly xrays. I was wondering if that the norm?!?!
chantable...Good luck!! We are all cheering you on!
Frmthahart...I lather up 3, sometimes 4 times a day. I have been overdosing at night, that I am surprised I don't slip out of bed!!
Hope everyone has an easy week!!!!!!!!
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thank u for the info. I'm going to keep on working out. Mind you the nurse never said not to work out but advised to not do anything too strenuous due to skin sensitivity. but I'm gonna keep on running.
I am putting on cream around 3 to 4x a day. Had rad #8 today and no SE other than just getting a little tan.
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