Winter 2013-2014 Rads

Bondsy - my RO mentioned the possibility of the lung scarring when he was talking about side effects during my initial appointment.  The other thing he mentioned is that in the future whenever we have lung x-rays or another scan in that area we should let them know about the possibility of scarring from rads so they don't go off wondering and then report something suspicious that needs to be investigated and then get us all worked up for nothing.  I thought that was thoughtful of him to try to prevent that.

Hi, I wrote several days ago about my Rad experience...That was my first post on this thread....As I did in the last post, I figured I would wait a few days before posting again....Today was my 12th Rad...I have 21 more to go, 8 of them boosts...So far so good...A little redness, no breast pain...The only pain I have is the muscles over my intire body, mostly the legs and hip, but I think it's the side effects from chemo that still plagues us all, even though we are done with it...But who knows, the rad could contribute to the aches and pains...Today not a good day with the aches...Left leg very painful...Hopfully the motrin will take care of it, just don't like taking to much...Take care, a great weekend to all,and keep on smilling

Holeinone, you are right about the Taxol, and lets us not forget the Taxotere...They sure can do a number on you...I can sympathize with you and the neuropathy...I too have it in my feet, and I had it before the chemo...It just got worse with the chemo...But today the leg hurts so bad and it's a bit swollen....Been using a heating pad all day, and I get some relief from walking...Will be seeing the RO Monday and will see what he has to say...Take care and good luck to you...

I had my first of 5 boosts today, overall 26/30. The boosts are given a little differently -- I am laying flat on a soft bed-like table with a pillow.  I just held my right arm behind my head, did not have to hold on to the bars.  There is an attachment on the rads machine with a template to target the incision/tumor site. It was double the rads total time, but only on one side; pretty simple and easy like the techs said it would be.  I am still receiving the 2 gray per dose.  I do feel very hot and flushed all along the right side of my face; feel like I have a sunburn, but it is not red.  I have been very sensitive to the radiation and have gotten these feeling throughout my radiation treatments. I can't believe I have only 4 more treatments and I'll be done. 

TeamKim-   The 2 tubes of Miaderm from Amazon are $69.99.  I already have Free 2 day shipping from amazon so don't know how much that would have been. 

Are you to put Aloe Vera and Aquaphor both on together at the same time for your in between treatment(s)?  

Good luck. I finished 10/25 today and for the first time saw a little pink under my arm.  No itching or anything else yet.  

Hi gals,

Finished my 5th treatment today.  I get X-rays every stinkin day for them to set me up in the right position.  I think I am a problem patient though because at my simulation I could only get my left arm up so far and as a consequence my left elbow is very close to getting radiated.  Today was so frustrating...after multiple adjustments and 3 X-rays they gave up and said we would need to start over.  They had me get up off the table, readjusted the head/arm mold, had me move back further, etc. etc.  Finally 2 more X-rays later I was good to go.  The whole process took 40 min!  That has happened twice now in the last 5 days.  

I did see my RO on Thursday and he made me feel so much better about the whole process.  He said risk of recurrence w/out rads was 15-25% and that by doing rads my risk was further reduced by 50-75%.  I think that means overall risk is around 5-10% if I do my math right.  Anyways he said not to worry too much about TEs and has had many patients do fine with rads and TEs.  He said many years ago it was pretty bad because the surgeons hardly left any skin and scraped so much out but these days they leave a thicker amount of skin.  I also told him about using miaderm and aquaphor and mentioned I had just bought emu oil.  He enthusiastically endorsed emu oil because it also reduces swelling.  He said he usually doesn't mention it to his patients because it is so expensive but thinks it is great.  So I plan on using all 3.  

Speaking of miaderm...I purchased 4 for $110 on amazon.  I figured I would come close to using it all since I started it a week before rads started and I am using it 3-4x per day over a large area. 

Dawn - I'm using the Calendula also...I use the aloe gel my RO gave me just after my treatments and the Calendula twice more during the evening.  So far so good, no pink or red yet.  

I'm tired, I'm exhausted and I can cry at the drop of a hat!  Just trying to get through the day is a battle of epic proportions but I have to keep reminding myself that I am a Survivor.  Sometimes, it actually works!

My countdown continues...only 22 more treatments to go!

MinusTwo, my RO gave me Hyaluronic Acid gel, which I am still using, I also got a small tube of Lidocaine HCL 2% because my skin is rashy and itchy. I have had 18 zaps, 15 left.

I wonder if you can buy the cream Kim suggested, Elocon? I am assuming they are billing my insurance for what they have given me.

Holeinone - I think the cream is RX since my derm doc said she's write me a script.  I decided to wait until I talked to the RO and to see if anyone had tried it.  You can check it out on google  -  'mometasone         '

I've had 23/33. Quite red. Getting sore in a couple spots - hoping the skin doesn't break down but RO said we can deal with it if it does. He doesn't believe the "expensive" creams work any better than lesser priced. He says aquaphor is the standard. He's also had women do very well with coconut oil. I asked about emu oil and he looked at my small bottle - said it should be fine he just doesn't have any experience. Probably similar to coconut oil but costs a lot more. My underarm and lymph node scar along with my "dog ear" are the sorest. Any other MX w/o recon. Going thru rads now? My RO also mentioned that woman with larger breasts tend to have more skin irritation.

I had my appointments with my RO and MO this last Thursday at Mass General (3.5 hours from where I live).  It was a good but long exhausting day.  I was offered and decided to go with the one week radiation treatment plan.  My RO said they have been doing it for years and it will avoid radiation to my heart and other areas (I had previous radiation to my neck almost 3 years ago).  I start treatment Feb 18th and get a total of 9 treatments, twice a day at 8:12 am and 3:36 pm.  The risk of side effects is a bit higher than the typical schedule but one week vs six and half is worth it to me.  I will post my experience on this site.  Because of Presidents Day I can't start till Tuesday and will finish up the following Monday morning unless they can get me in on Saturday morning (usually reserved for emergencies).  MGH has a good rate at the hotel a couple of blocks from the campus so we will stay there and I will be able to walk to treatments.  The hotel provides a mini-refrig and microwave in the rooms. One week's hotel charges will be a whole lot cheaper than the 8 weeks I did the last time (luckily my mom helped out with that one). The hotel is next door to Whole Foods so eating will not be a problem.

My new MO, Dr. Moy, is terrific.  She agreed no chemo with my Oncotype score of 17 and that I could start with Tamoxifen because of my osteopenia, even though I am post-menopausal.  They are doing some research on the benefits of going longer than 5 years on hormone therapy but the results aren't in yet.  We also talked about intermittent hormone therapy (on and off the pills) and she said that that research is promising but not finished yet.  All in all I am glad I went back to MGH for this cancer.  

By the way my RO recommends calendula cream.

I just started a new topic called One Week Rads Group for everyone doing this protocol to share experiences.

Hi Lizzie:  I am very interested in your experience as I will be having radiation in the near future and have quite a commute as well.. All the best and I will be there right along with you for support and for learning. 

Tthis is the first that I'm actually kind of dreading going to rads this next week! 

Lizzie, I live very near you, I'm in Clifton Park.  I am interested why are getting treatment at MGH.  I also noticed you had no affected lymph nodes.  Is the one week protocol you are having because you are at such an early stage? After chemo I have 6.5 weeks of radiation at Ellis. I am interested in a shortened option if it would benefit me.