January 2018 RADS group

DownNotOut

Since I finally got a start date for my rads therapy (Jan 3) I thought I would go ahead and start a group for January 2018. Even though we may be a bit anxious, let's stick together and get through this! I would love to know about your treatment plans, decision making, side effects, and how you are coping emotionally. What advice is your RO giving you? Any pearls to share with the group? I cannot wait to get my simulation done on December 27 and get this next phase started! Who will join me

HersheyKiss

DownNotOut, thank you for starting this thread! My official start date is January 2nd. The plan is for 30 treatments with 5 boosts at the end. I've completed my simulation and will do verification the Friday before New Year's. I agree, I'm looking forward to beginning the "next steps."

Anonymous

Thanks for starting this post. Since rads is my last phase of treatment, apart from Letrozole, I will be eager to see how others are doing.

My planning/mapping is January 2nd. Eager to get going in the new year!

Kim

DownNotOut

Thanks for joining in, and I look forward to hearing from more January 2018 RADS warriors! How many of you got a RO second opinion? If you did get one, did they suggest basically the same plan of treatment? I was gung ho for a second opinion but after 4 weeks of no call backs after multiple attempts to get through the door or get an appointment (even with my BS's office calling twice and also one day I just walked in and tried to talk to the manager), the "award winning big university" doc who came highly recommended is now out of the picture. I just couldn't wait any longer for a plan. The very nice RO I'm sticking with says he likes to start rads within 8 weeks of lumpectomy for early BC like mine if no chemo, because the longer the delay, the more cells the rads must kill.

HersheyKiss and KimPossible (love those names!), you had a lot of nodes removed...any issues with LE or chronic pain? Kim, I sure hope you are healing well from your last procedure this month. I hope you let the family do the decorating this year!

Lewhy

Hi everyone,

Thanks for starting this DownNotOut. I have my first appointment with the RO tomorrow. I am assuming I won't start until January. I am looking forward to putting this all behind me and feel very fortunate that I will be able to walk to my appointments. It will be interesting to see what everyone's treatments will be like and what the different RO's suggest. Best wishes to everyone!

Anonymous

DownNotOut, I tried to show my lymph node removals in two ways, but I could never figure it out. When I had my LX, they removed 7. Six were cancerous. So, they got me on chemo immediately and then took the rest axillary nodes. 5/19 were cancerous. My doctors were surprised, as they were not expecting to find more. So, I am glad I had them ALL removed. I healed pretty quickly after the first surgery. No chronic pain. Since I am only 19 days from my last, I am seeing a Lymphedema specialist tomorrow. My pain was worse this time but much better this week. I am struggling with range of motion, though each day I can lift it a little more. I had been going to myofascial pain therapy for an unrelated cause prior to my BC diagnosis. I picked it back up half-way through chemo and started again last week. I am not sure if he will keep me on that or order true PT. I have to say, I am pretty feisty, but I got help with decorating this year. We couldn't do our annual tree cut down. I have to help drag it out, and that wasn't happening.

I did not see a 2nd RO opinion. I have been very pleased with my team of doctors and at this point, I am just ready to get the show on the road and get this over with. I need to see what will be my "new normal" and go from there. My BS told me two weeks ago I had done better than most of her patients. I don't know what to say, except I love my life and have done everything within my power (much is outside of it) to stay well through treatments (avoid sick people) and keep on keeping on.

I hope that helped answer your questions.

HersheyKiss

Hi DownNotOut,

My treatment plan is a traditional one given my circumstances, so I didn't pursue a second RO opinion.

Lymphedema is a concern of mine, and my RO is writing a script for PT during treatment. He wants me to be working on range of motion only, no massage of any kind.

At simulation, I received a packet of information that included my shopping list. My RO recommends using Dove or Cetaphil soap, pure aloe vera gel, and Aquaphor ointment. What are your ROs recommending?

Take good care, everyone!

Anonymous

Hi Hershey, As far as soaps go, I have not been given any specifics. Here's what I have been told NOT to use in the breast, chest wall or underarm treatment areas unless I first check with the treatment team: no lotions, creams, oil, deodorant, perfume or makeup.

They say I can use a non-metallic deodorant. I am currently using Tom's. I have gotten used to it just fine, after using the same one cotaining aluminum for decades. It says I can also use Argo cornstarch as a substitute.

It was also suggested I do not shave under the arm during radiation.

HersheyKiss

Hi there, Kim!

My shopping list states, "Keep it simple." I guess things will be simple with no lotions, creams, oils, etc. to apply.

I use Tom's as well. It's taken some getting use to, I agree. Not sure about applying the cornstarch ... that could be messy right out of the box!

PauletteK

Hi there, I think I will be part of January radiation also. I started my radiation since December, now I’m on 9/30.so far skin is holding up. My RO just wants me to use Miaderm, I used to use Aquaphor at night. I also apply green tea before lotion.

Anonymous

Hi Paulette. Glad you are doing well so far! I have never even heard of Miaderm. While, I am not worrying about rads, as a natural redhead who burns easily and has fairly sensitive skin, I wonder how this will affect my skin. Of course I will let y'all know!

It's funny, Hershey, I haven't put Tom's under my right arm since before my 12/1 surgery. Since BC began, I really don't notice that I even need it, though I shall continue to use. I did not sweat much at all before BC, so maybe that's why it is not really a big deal right now.

PauletteK

Hi Kim, you can’t find Miaderm in Walgreen nor CVS, I ordered from Amazon. Today I will be #10, it goes fast.

JenRuns

Hi all ... jumping in to say hi. Don't have a start date yet, but expect it'll be mid-January.

I finished chemo three weeks ago and had a rads simulation on 11/27. I was scanned for photon and proton therapy. RO decided on proton therapy (less radiation to heart and lungs), but protons + TEs don't work (the beam won't go through the port thingy). So, he arranged for me to have my exchange surgery between chemo and rads (did that yesterday!!). I go in for a re-simulation on 12/28 and will get my start date a week or so after that!

Looking forward to going through this step of treatment with you ladies!

Jen

HersheyKiss

Hi Paulette,

It's good to see you on this thread!

Oh my, you will nearly be finished with treatment by the time I begin. I'm sure I will have lots of questions for you along the way.

It sounds like you are doing great using the Miaderm. I'll have to ask my RO about it.

Enjoy the rest of your evening!

DownNotOut

I had my first MO appt yesterday and I think I like him. Not sure about his nutritional advice (very little) since he said that it would take an incredible amount of dietary changes to make any difference in my estrogen status but I could eat tofu and drink soy or almond milk if I like it. He did agree with a Calcium, Mg, and D3 supplement. I didn't get much more than that but it is a big interest of mine after RADS is finished so I'm trying to read legitimate sources to learn more. My RO told me not to start too much "new stuff" during RADS but seemed intrigued by my question about Curcumin (an anti inflammatory supplement). I think we are supposed to stay off antioxidants during RADS so they don't compete with killing off all those evil cancer cells. My MO agreed to check some baseline labs for me like CBC, Thyroid studies, Triglyceride, Cholesterol, metabolic panel including liver enzymes just so we know where I am before starting all of this. Yesterday I bought some Tom's without metals deodorant and a tub of Aquaphor ointment and started using it - love that stuff already! My RO recommends Miaderm also, and it comes with and without lidocaine. He said get both and use the lidocaine version towards the end. I have seen it on Amazon as well, but a nearby compounding pharmacy now stocks it at his request (behind the counter - must ask for it). You gals could call around and see if you can pick it up locally.

Lewhy, how did your RO appointment go yesterday? Welcome JenRuns! Welcome PauletteK - Congratulations on #10!! I've read your posts on another thread and am already learning from you

PauletteK

HersheyKiss - my RO suggested we use Miaderm with lidocaine/ radiation lotion all the time, my skin is holding up well for now, I'm hoping it will continue do well. As I explained before I apply green tea on my skin before lotion and I think it helps. I suggest do more stretching exercises before rads when you had surgery, because your muscles actually get stiff also my PT suggested that I massage my incisions before rads.

I am still learning from the ladies in the other thread, I just pray to God please let my skins hold up well.

Down - thank you started this thread, give us a chance to meet each other.

SoniaL

My rads began on December 13th so I won't be don't until January 26th...glad to join this group with the January ladies. So far so good on my treatments although I've only had 6. I have a few pink spots but no pain. My RO only recommends using Aquaphor, but I am using Calendula cream right after the treatment and when I get home from work. I only use the Aquaphor at bedtime and then sleep in an old t-shirt because it is so greasy.

Paulette, I've read that the green tea really helps - how do you apply it?

Lewhy

Hi everybody, had my first RO appointment yesterday and I was really happy with the team. I have a vacation planned and they arranged to have my mapping done this morning and I will start rads next Wed. They even gave me late appointments so I won't miss too much work. I was surprised that I can use regular deodorant. I see that you like the aquaphor Down. A friend who worked on an oncology floor also recommended it. I think I will buy some tomorrow along with some Miaderm. Take care everyone

PVM

hi ladies hope you don't mind me jumping into this group. I started rads last week & won't be done till mid Jan. I have had a week of my 21 rads done & so far so good. I am getting 16 regular & 5 boost. I saw my RO today & he said my skin is doing good so far but advised me to put cream on my back as well as the rads go through that area i was told by my RO. I am getting Rads not only on my breast but my under arm. I am using Glaxal Base & it actually soothes my skin when I apply it. I know that next week shall be a different story & shall hope my skin holds up like Paulette's . I too am worried about developing LE from the rads or even later on but I'm staying positive. My RO told me to not put any cream on prior to seeing him 2hrs & deodorant. I am washing with Aveeno baby soap it's mild & hypoallergenic oh & I'm trying the to drink 2L of water a day for my skin.

PauletteK

I learned this green tea from ladies in previous thread. First you boil water and put your gree tea bags, I usually boil it for 15 minuets then I turn off the stove and let it soak for another 10 minuets. Then I transfer to a bowl and put it in the refrigerator. If you like it cold then you can use the green tea straight from the refrigerator. Usually I use makeup pads dip into the green tea and apply to my skins. Afterwards then I put lotions. I even bring green tea in a Tupperware to radiation, if you bring to radiation make sure green tea is room temperature. Tech told me we can’t apply anything cold to our skins right after rads.

I didn’t use green tea for the first week, I can see my skin actually turned pink, after I used green tea I can see my skin got better.

Hope this help you.

DownNotOut

Thanks, Paulette. I had seen others say they use green tea before applying lotion, and I was wondering how to do it. What is the water volume/tea bag ratio? Is it like tea you would drink or really concentrated?

PauletteK

Down - oh yea, I used the regular green tea in my house, in fact I used loose green tea because I got it at home. I usually don’t make too much only one and half cup of water only. I like to make my green tea strong so I can have full strength.

OCDAmy

I will probably chime in here at the first of the year. I completed 17/28 rads today and with the holidays I will be getting treatment until January 8 - so long as nothing happens (I had to tack on a day because the machine was not working one day). I have not had any reactions through #14 but now it is getting really red and a little itchy, especially under my arm where I am also getting treated because I had 2 positive nodes. Best of luck to all of you - compared to chemo this is a breeze!

DownNotOut

Welcome, OCDAmy! Congratulations on completing #17 and thanks for walking this road a couple of weeks ahead of the rest of us. I hope your skin heals soon and does not get worse. Keep us posted on how you're doing

Tpralph

Hello to all ive chatted with before and to ones whom I will over the next couple of months. Love these forums.

Thanks Downandout for starting this forum. I was just looking for one today and voila here we are!

I too am a January rads gal. Starting Jan 15 a day after I get home from a southern Caribbean cruise. Glad to be going before rads, at least ill be able to go swimming and use hot tub. The only thing he said I couldn't do was to sunbathe, which I do not do anyhow.  Will use lots of sunscreen.

My RO suggests Lubriderm or Glaxal Base.  Paulette, ive looked up miaderm and amazon Canada site the cost is 202.00!  So I think after a bit of research I think ill see about the glaxal base- seems it is recommended for radiation. Anyone else have suggestions?

I get my mapping on Dec 29. I will be using the wheels of hope transportation as I am about 1 hour away from the cancer clinic and don't really want to drive everyday myself.

I'm a little (ok moderately) worried about LE, have had 21 nodes removed and knowing that that is high risk enough without the risk from rads. Just had ALND 3 weeks ago, arm still fairly sore but coming along. Have a small seroma which is being absorbed nicely. ROM coming along. no cording yet that I notice.  Already started tamoxifin a week ago and other than a few more hotflashes I think I'm doing rather well on it.

Anyhow, looking forward to chatting with the group and forming new friendships in this crazy adventure called Cancer.   (notice I didn't say journey?? I found I hate that term as for me, all of my previous "journeys" have been pleasant...and .....this ...is ...not.)  hmmm now that I think about it , adventures are usually positive too.....anyone got a better term for this not planned, not wanted trip of a lifetime????

 

PVM

Hi ladies had my 7th rad session today & so far so good. I am am feeling a bit sore on my breast & when I stretch my arm to do my stretches but nothing too bad or painful. Hoping my skin does not get too affected so far it's good but I'm sure my next week that may change. They play music in my sessions & it's great my session lasted 2 songs & I was done. Makes the time pass by. It takes longer for them to set you up than get rads lol

Amy I still can't get myself to keep my eyes open when they are zapping so I am not sure if the machines they use have the leaves you said or not I don't believe so. Hope your skin does not get too bad & hope its able to recoup this weekend. Woohoo your halfway done that's amazing

Tpralph have a wonderful cruise & enjoy. I use Glaxal Base on my skin & it's been good so far. I am also worried about LE esp as I'm getting Rads under my arm but so far so good so I shall stay positive.

Paulette thanks for the green tea advise I may have to use that as well.

PauletteK

Tpralph and PVM - maybe you can start do some stretching so your muscles will not be tight, that’s what my PT did for me and gave me all the stretching exercises. For Le, I stopped using my flexitouch pump because it irritated my skins so I have to do manual massage everyday. Also I wear my sleeve daily. Make sure get your sleeve ready, So far I have some fluid but it isn’t that bad,

Amy - I counted my zap, 11 times also they X-ray me so often so I learned when they start my zapping.

VL22

Thanks for starting this DownNotOut!

Hello to all my ladies from other threads!

I go for my mapping 1/8. I will also meet with my RO again- I say again because it will be the third meeting! We all thought I was not going to have chemo, but pathology after surgery changed all that, so will see if the initial plan we set up will change.

It will be nice to have off over the holidays. I’m not even thinking about rads to be honest . Just the next piece that needs to be completed. Once it starts I’ll be whining however!

Great to read all the tips

OCDAmy

Paulette, it sounds like we both have the same machine. I get 11 zaps too.

DownNotOut

VL22, you can whine here anytime & we're happy to meet you & the other new gals.

Just curious...how many of you got/plan to get tattoos vs the markers? If you go for markers, do they really stay on & when reapplied, do you think it is accurate? I asked my RO about fluorescent tattoos that could be seen under a black light and he said he had never heard of it but would look into it for me. That sounds totally cool to me,and 20 years from now I will not have those little reminders of this experience !

PauletteK

Down - they put tattoo on me, I can’t even tell where because I have freckles all over my body lol

Amy - the rads machine brand name is Elekta.

Good night everyone!