Starting Radiation April 2017
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I had my first of 20 radiation treatments today (actually it might be 25 or more, the doctor is still deciding if I need a week of "boost" treatments based on some new literature/recommendations). I got marked up a week ago. They gave me tattoos but went back over them with sharpie and covered them with clear stickers too.
The first treatment went fine, though the room was a bit cold and it was hard too keep from shivering and moving around once I was in position (tomorrow I think I'll ask for an extra warm blanket). Also, I had a skin reaction from the dye used during my lumpectomy in February and the wound is about 90% healed. I hope it finishes healing all the way and doesn't get worse from the radiation.
In the waiting room there were a bunch of people that were finishing their course of radiation and they all assured me that it would go by fast.
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Bdagal, my MO and RO took all the information from my path reports and put them into a form on the NCN website and it told us what course of treatment to follow. We are all different due to type of cancer, location, stage etc
Cartab, congratulations on your last treatment today! I'm happy you've had no major problems with your treatments. 1 1/2 hours one way? Oh boy! I miss my rads team too. For now I get to visit my chemo team when I get my port flushed. I'll miss them greatly once my port is removed.
Siciliana, I drove myself up till the last 2 treatments. My DH drove me to those as I've been taking pain meds for my skin trauma. It seems to be getting a little better with each passing day. Today was a sleep day for me, I knew I over did it on Saturday and Sunday. Six weeks is way to long to be away from yourfamily and your garden.
Norcalteach, that's awesome to get things rolling. Twice a day? WOW! 44 treatments DBL WOW! I've done the same thing about laying there thinking of others before me. You are absolutely right! This too shall pass! We are all here with you as your treatment journey continues.
Hugs to everyone! I'll be back later... umm tomorrow lol
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Done mapping, done follow up with loads of photos/xrays and onto my first rad treatment today, 30 in all. I was cold too last time so will wear warm bottoms today. Because I still have surgical pain 6 months later, I am worried about more trauma to the area. But got to get this done! I am hoping my hair grows enough in the next 6 weeks to be able to shed the head coverings but it is so slow in growing so far! Good luck to all of you gals sharing this time in April!
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Sorella, welcome. I'm sorry you have to be here but glad you found this group. On your next treatment ask for a nice warm blanket, they should have one for you. My hair had grown in just enough to keep my head warm without a hat/scarf. It seems other men/ladies hair grows faster than mine. Make sure you follow the skin care regime your RO provided for you. A lot of ladies here had no skin issues while others like myself had bad skin issues. I'll be praying you are one of the skin trama free group. Please keep us posted. I see you don't have your diagnosis info on your profile. We've been doing some discussion on how we all have different treatment procedures, I've been making notes about BC type, stage, grade etc but there doesn't seem to be any one treatment plan to coincide with our profile info. My MO andRO loaded all my path report info into the national cancer data base to get the best way to proceed with my treatment. It seems to be a pretty diverse way of arriving at final treatment plan. Things that make you go hmmm...
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I recently consulted with another RO for a second opinion. She made it sound like the short course would be 20 treatments (15 regular plus 5 boosts to the tumor bed) and the long course would be 33. According to her, the total amount of radiation is the same - so higher amounts per visit for short course. The longer course is usually associated with lymph node involvement and includes a larger area of the body as well.
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Hi Ladies!
Just checking in. Today is #7 for me (16 rads + 4 boosts). The green tea sprays have seemingly been working so far, but I know it's still early in the game. I'm using it morning, noon and night along with the calendula gel in the morning and the Mometasone cream in the evening. Keeping my fingers crossed!
Bdgal...I feel so bad for you, having to be away from home for such a long period of time. I hope the time passes quickly for you and you'll be back home before you know it.
Sending good vibes to everyone! :-)
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VLH - I'm allergic to adhesives/latex as well. I had awful reactions to the bandages and tapes they used during my surgery. But my skin isn't reacting badly to the clear, adhesive circles that are over the sharpie marks. I had some put on Thursday that were taken off today and there is slight redness, but not an itchy, raw rash like usual.
I had the first of 33 rounds today. I was given a list of moisturizers to choose from, but the top recommended one from the doctor was Andree's Moisturizing Gel that is made specifically for radiation patients. It soaks in quickly and isn't greasy at all. I'm not a fan of lotions so this is perfect for me.
I'll check back in next week. Nothing to report after the 1st round aside from being cold in the room.
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amw5 I am not sure what they do with a lot of positive nodes but I can tell you I had just one positive and I will be getting 28 rounds with boosts still TBD. When you say ALL, how many is that? I am curious to know what your rads plan will be.
As for me I had my mapping on 3/28. I will do my simulation 4/6 and then start treatment on 4/10. My skin MUST do well so I can get these darn TE's removed and replaced ASAP. They have been the worst thing I have experienced. My PS said I have to wait at least a month after rads. My RO gave me MyGirls Cream so I hope it does the job.
Where are my ladies from Dec. Chemo?
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Amw5, did they tell you how many nodes were taken? I had 2 positive of 13 nodes. They did very aggressive radiation to my armpit and my whole left chest wall due to the number of nodes that were positive.
I'm having serious peeling of my whole underarm and now it's gone back towards my back and up across my foob. What fun! NOT! Sending prayers that everyone here doesn't follow in my footsteps. I'd be devastated if you do 😔
SCGirl, my PS told me I have to wait 6 months before he'll even consider doing my TE exchange. Maybe due to amount of radiation to my left side? I'll be keeping my fingers crossed and prayers said that you can get your TE exchange ASAP 🤞🙏
I've done nothing but sleep the last 2 days. I'm surprised my eyes are still open now. What a ride this has been since day one! Along with everyone else.I want off this roller coaster!
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hi ladies - had my first appointments today at Dana Farber. I go in tomorrow for positioning/X-rays and tattoos. Then practice run next Wed, and first session next Thursday. I will have 15 whole breast and 4 targeted boosts to lumpectomy site. So I should be home by May 10 (yay!!!).
So the reason it takes a few days till practice session is because the RO and her team have to review the angling of the beams to target the breast correctly, using the X-ray images, while minimizing any targeting of the lungs, etc. I guess because we are all shaped differently, this is really precise targeting, per individual (which makes sense, but I hadn't thought of it like that at all).
Good luck to those of you on this journey with me! Hoping all is well for each of you
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Radiation begins for me tomorrow, April 6th. I am having 28 whole breast plus regional node treatments and 8 additional tumor bed booster treatments. I need to pick up some lotion. My sister finished radiation 2 years ago and recommends Recovery Skin Relief Ultimate Soothing Cream. What are you using?
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hey letsgogolf - wow, you have quite a few sessions to do! Are those all on individual days? I have some aloe gel (99.9% pure, no alcohol) as well as Aquaphor and Eucerin....hoping they'll work ok. May look into the cream you've mentioned too. Someone on one of these threads also mentioned using a cooling towel after each treatment, so I am going to try to find one of those as well. Best of luck tomorrow and throughout your treatment!
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Bdgal, yes, they are all on different days. Makes me tired just thinking of it. I have to drive 45 minutes each way for treatments, too. Good luck to you as well. Great news that yours was DCIS. That has a great prognosis!
I wonder if those cooling towels are the same as I bought last year for golfing. If so, I picked them up at Walmart for like $5 each.
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hi letsgogolf - yes I believe they are the towels used for sport. The gal who posted about them also had a long drive, and she said she would put it on for the drive back home.
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Hi all,
I'm beginning rads on April 10. Lindi skin products were recommended to me by a Boutuque near my home specifically for breast cancer patients. My RO nurse told me to wait before buying anything. Lindi does carry cooling towels that come on a roll. You can order their products online. I I would check with your RO before purchasing anything. Blessings.
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Diagnosed on 1/26, lumpectomy on March 15. First meeting with radiation oncologist on Tuesday. Wondering how long after the first meeting does the mapping etc., happen and then how long until the treatments begin. My surgeon said it would likely be 30 treatments. I guess it is possible that I will start in April...not sure and anxious about the whole process.
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Hi 🦋, welcome to our Family. I'm sorry you had to join us but glad you did. I'll add you to my prayer list that all of your treatments are quick and you have no SEs. Is the products your RO nurse recommended have to be ordered online? My RO nurse told me to get my products before I started my treatments. She said it's the worst thing to go through and not have what you need when you need it. I got everything they recommended but it didn't work for me. Oh well, this to shall pass.
Letsgogolf, wow that's an awful lot of treatments. You'll be in my prayers as well 🙏
Bdagal, May 10th will be here before you know it! Prayers for you to fly through your treatments without any SEsand be back home with your Family ASAP 🙏
Hello to everyone else 👋👋
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I was kind of surprised today. After getting me all lined up and the measurements exactly right, there was not much to the actual treatment. The machine moved around to several spots and each stop was pretty brief. I would guess the actual treatment was finished in 7 or 8 minutes. They gave me samples of Aquaphor Healing Ointment to use until I purchased a larger tube. I must say that I absolutely hated it and will not be buying this. It was like thick vaseline. Yucky. I stopped at a pharmacy and purchased Recovery Skin Relief for Radiation. I feels really nice, sort of like a cool mint. The thickness is perfect. My sister used this 2 years ago when she had radiation and she had no problems with her skin. We are both pretty fair. She is blonde and I have auburn hair.
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Actually, the Lindi products were recommended by the "boutique" owner. My RO nurse told me to wait before buying anything. I can get the products at the boutique and you can also order them online. The owner told me the Lindi line has cooling towels etc, So, if I get any SEs I'll be asking my RO for recommendations so I can be proactive. As much as I want to buy lotion etc. they prefer their own products so I'll see how it goes.
My simulation was March 30 and I'm waiting for confirmation to start on Monday. They need the week to review simulation placement etc. 30 minutes is the entire session. The actual radiation treatment is not that long. At least that is what I was told.
Thank you for the warm welcome. Sending prayers and positive thoughts to all with love. 🙏
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Thank you letsgolf just saw your post! I'm going to write that lotion down. Does Walgreens or CVS carry it OTC? Thanks also for giving a preview of first session. Fear of the unknown is a challenge for me.
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I had some trouble finding it. Walgreens, Rite-Aid, Walmart and CVS did not have it. None of these pharmacies in my area had anything for radiation. I found it at a small pharmacy in the town where my sister was treated. Apparently her medical group has this particular pharmacy stock it for their patients. I will see if I can find it on Amazon or eBay and let you know.
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Hello everyone. I was in the March group but am joining the April group since I barely got started with rads tx before I had to take a week off. I just finished my 9th treatment today. I do not have any skin issues yet or fatigue. I've been using Tri-derma radiation cream twice a day.
I asked my RO how they decide on the rads treatment plan since the number of sessions seem to vary by individual. He told me that age can play a role in the number of treatments and also whether you've had chemo prior to rads. If you've had chemo, they sometimes deliver the radiation at a lower dose per day. This is done because if you've had chemo they think your skin might be more vulnerable to damage. I finished chemo Feb 16. I am scheduled for 37 rads treatments which includes about 9 boosts to the tumor cavity. The RO also mentioned that someone younger might receive a more intense dose with fewer treatments than someone that is a little older.
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Re: Creams - RO recommended & I used Miaderm - which was developed by ROs - received some samples & then ordered on Amazon as needed. Used a week before radiation began & then 4 times a day, or about a tube a week. Not cheap - price can be lower per tube if you buy mutliples. As a natural redhead, I have very fair skin. No burn after 16 whole breast + 4 boosts (started in Feb, ended Mar 21st). Received Aquaphor samples from RO, but did not use due it containing petrolatum. RO prescribed Mometasone Furoate (a coritcosteroid) which I used and when nipple area got a bit ouchy, also prescribed a Lidocaine ointment. Have also heard of, but did not use, green tea spray - the advantage of which is not having to wash off before radiation. There seems to be divergence on what different ROs recommend/prescribe. Take a look back at the March and Feb 2917 discussion topics - lots of discussion there.
I used the little pillow received from Nurse Navigator before surgery to use for post-op comfort (local church makes these to hand out). Placed pillow in armpit area to shield from rubbing. Website CureDiva sells pillows for this purpose also. Pillow was great for putting underneath seat belt to avoid rubbing. Website LotstoLIveFor,com sells comfort slings & pads to tuck under your breast to keep the skin fold cushioned & help prevent irritation - I used a sling and found it worthwhile.
Hope this helps. Hugs!
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hi ladies...I'll be starting rads on Monday, April 10; 25 treatments excluding boost (not sure I'll do it). Is everyone having supraclavicular nodes radiated? I'm thinking of opting out because beans would hit part of thyroid and esophagus as well as possibly brachial plexus nerve at collarbone.
I'm planning on using the green tea spray + boiron calendula gel 3-4x/day. Hopefully will keep me from frying! Anyone else nervous about skin toxicity issues?
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Good morning everyone. I'm not sure why I'm wide awake at 4 am?!
I'd like to welcome the new girls, I'm sorry you had to join us but this is the best place to be at this time in our BC journeys. I'm not an expert about radiation but I'll be here to lend a helping hand when I can.
I'm praying all of you gals are getting through your treatments with very little SEs.
This is the first morning in 2 weeks that I haven't woken up with excruciating pain under my arm. Thankfully my skin has calmed down a lot in the past day or so. I still have patches that are peeling but there is new skin underneath it. It doesn't feel like I'm being skinned alive every time I move so I'm loving that! It's supposed to be warm this weekend so I'll be out getting my garden ready for planting. I'll see how well my radiated skin holds up with that horrible thing called sweat. I'll be picking up tons of sunscreen and bathing in it as I'll be out in the sun. I may even buy stock if I have to use as much sunscreen as I'm told I will. I ordered some umbrella hats to try out and I must admit I look pretty silly in it! If it helps keep my skin safe I'll take looking silly over damaging my skin further. Thank goodness my garden is at the back of the house and a loooong ways from the road!
Healing hugs to All 🤗
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Hello everyone, I start my 33 rounds of Radiation on Monday. I was very surprised at how large the area was that is getting radiated. it goes all the way around to my back, like as far as I can reach back there and in the front it goes over to like where my esophagus is. Is this normal or is mine considered a large area, not sure if all are the same? I would of asked but didn't realize it until I got home from my mock procedure, when the market you all up. Thanks
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congrats and thank you for positive wishes!
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hi Angela - I too was surprised at the very large radiation field! I just sent my RO an email requesting thyroid, esophagus and neck be removed from rad field and also said that I'm very much on the fence about supraclavicular nodes because of the delicate nerves in that area and the fact that I'll be taking an AI for years after rads are done.
Has anyone seen any data on percentage benefit of including supraclavicular nodes?
I also requested reconsideration of IMRT instead of external beam rad. I initially requested IMRT after reading that it does less damage to healthy tissue and skin toxicity, especially since I have already had reconstruction (implant). RO told me she was confident that my insurance would NOT approve IMRT so she didn't do a plan for it. I just called my insurance and was told that IMRT is covered (at 100% since already met OOP for this year)! Very frustrating.
Anyone else feel like they are having to work really hard to get accurate/honest info regarding side effects and/or treatment from their RO?
It seems that any SE I inquire about and express concern about are answered with "oh it's a small percentage" or "you can take a pill/do PT, etc."
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