Winter rads 2014-2015

JustJean,

I have said it before and I will say it again, NO, to me your photo depicts a scenario that is not acceptable, IF there was a way to prevent it. Perhaps there was not. Maybe it had to be.

Not getting a return phone call is also not acceptable when you are in that much pain.

To CoyoteNV-- I realize I am probably the one responsible for taking a few questions to help answer "why not me" to another level, which may not be appropriate for a poll on this forum.

oh JustJean, I'm tearing up with the thought of what you've endured. You have every right to rant, scream, cry or whatever you need to do.

Gentle hugs my sister.

Hi Just Jean, you actually have clothes in the washer?? I have piles, just piles, white piles, dark piles, just waiting for me to get off the couch. I hate fatigue! I do not get many answers from the CC either. I was told that radiation dosage is very complicated. It is, that is why I was asking questions. I also inquired about side effects, and they blew me off with "we deal with them if they happen". Deal with what? When would it happen? Fix it how? I am very frustrated, and I will be so glad to see the last day come. I hope you heal up soon!!

JustJean

Just so you know, I am totally on your side, I hope you did not think otherwise.

I have no idea why people have such bad effects - like you are displaying. Again that same question, "why not me". Why, why, why?

Why do some of us get such painful skin issues and others do not?

What is the reason?

Did they increase your local dose to such a level to cause such skin issues?

I do not know the reasons, but I really do wonder about the reasons.

Most, if not all medical treatments (not in a true emergency)- it is required to explain ahead of time what will be done, how it will be done, and if it needs to differ from the usual and norm --the what and why. Clearly you were not told this and it was not discussed. Certainly you have way more than a mild sunburn.

So, the question is, did they realize ahead of time it was possible due to your personal medical history that they would need to do such and such and there was an increased chance of major skin issues?

I think now that is the question that needs to be asked and addressed.

What dosage are any of us getting? daily, cumulative? And is this dosage acceptable to us? the patient?

If we know ahead of time that we are possibly going to get such a severe skin reaction, would we choose this approach?

Is it based on the dosage of the radiation?

I am very surprised to realize that the wall of bras is at the Cleveland Clinic.

You are being treated at a major, major, major well known health care facility.

Your clinic knows the rules, the standards, and the regulations.

And certainly knows to return your phone call on a weekend when you are in pain.

This is all regulated. And Cleveland Clinic knows this better than most.

Hi Yikes, just because the CC has a reputation known around the world over, doesn't always mean that everything is right. I have to remove my wig for rads, upsetting at best. I have to lay exposed for rads, no covering on my boobless chest scars and all showing. It is disturbing because anyone that walks down the hall can see the monitor. I have asked for the radiation dose, and I was told it was complicated. I asked about side effects and they told me they would deal with it if it came up. What comes up? How do they plan on fixing it? I'm just very frustrated, and I can't wait to be done. Sadly I have 18 more days to go, and then she will decide how the skin looks if she is going to add 5 boost. I had a modified radical mastectomy with clear margins and I am Stage IV. Ain't no 5. Just what might come back? Being triple negative, and I cannot have AC/T ever again, my treatment options are limited. I am more concerned with living than fearful of it coming back. So back to rads tomorrow.....

JustJean, Holy cr@&! I just got caught up on the posts. I remember when you posted about the bra wall. I'm shocked and disappointed that the esteemed Cleveland Clinic had this tasteless and offensive display. You would think they would be more aware and sensitive to their patient's needs. I'm pissed off that the medical personnel aren't taking better care of you and aren't responsive to your needs.

I have been dealing with blackened, burned, cracking skin from my rads which ended on Tuesday. It's so painful to move because the skin cracks open and exposes the not ready new layer of skin. I have a burn above my clavicle by my neck, too. I had to have people pick my kids up from school because I can't turn my neck or move my right arm without pain and tearing skin. I am so surprised my this strong reaction. I have olive skin and rarely burn. I received the standard amount of radiation (50 gray) total.

I was wondering how Jean was doing laundry with her injury, until I read that her dear son is helping out. My injuries aren't nearly as bad as Jean's, and I can't reach into the washing machine or fold clothes.

My RO is very accessible and responsive. However pre-rads, I was told I would most likely get through just fine. Now my skin is black. Poop. But I'll get through this, too.

I had three techs who worked in teams of two during my treatment. One of them is a male tech. At first I wondered how I would feel with a male tech. I wear the double gown, one forward, one backward like a robe. I lay on the custom cradle/table with a support under my knees. As soon as the gown is lowered I am covered up with a towel. The towel is moved aside during the time they line me up, then replaced. The male tech was wonderful and very professional..... and his hands were always warm. The techs only touched my skin to move my arms or chin.

BTW, more men have seen my boobs in this past year than have in my entire life.

I guess my post did not make sense (i know what I was thinking!)

to Beachbum1023 - that is exactly what i was trying to say!

Cleveland clinic knows the rules and still does not seem to be getting it right.

I think many of us agree that something is just not right.

Removing the wig is absolutely baffling to me. Why for some?

If someone can explain the mold/form thing I would appreciate it.

I did not have a mold or form thing.

I was told to turn my head to the right to get into the correct position.

My head was not in any mold or form thing.

Regarding the mold: During the mapping/CT visit, the mold was made. It's called an alpha cradle. When I laid on the table, the portion from above the waist to my arms (which were positioned above my head) was soft and fluid. Once I was in the desired position, a chemical was added to the liquid and it turned into a solid foam. This foam form was put on the treatment table before I laid down on it. My back, head and arms were "cradled" in place by it. It wasn't uncomfortable or confining... it just helped me stay in position for treatment. A custom mold, just for me. Similar to the custom ski boots, if anyone has ever heard of them.

thanks PoppyK,

interesting. I did not have a mold. just told to be still. They lined up my tattoos with a beam.

how many have had these molds?

so sorry about your skin reaction.

I do recall asking about tattoos, and was told that they do not tattoo if need radiation for head, and then they use a mold thing, which I saw something in the tx room.

But, they told me not for breast cancer, or at least not for me.

JustJean - Your story is horrific to be sure, and we all realize it here.  You are living one of our greatest terror.  Not one of us dismisses what you have gone through and continue to endure. As a matter of fact, the questions of "Why does this happen to some and not others?" is inspired by those of you who experience this torture, not those of us who did not. It certainly is NOT your fault in any way, but is someone culpable?  I know we speak in unity when we say that this is unconscionable if there are techniques and equipment available that avoids this, and it is not used.everywhere. 

Personally, I am eternally grateful and humbled to the core that I was spared what you and many others have endured.

Yikes - Had a mold.   For what it's worth, insurance covers private clinic treatment also.  I'm beginning to think they are a really good option.

chrissie29

so you answered that question. you had tattoos and the mold.

I can sort of see that if a mold was made with both your hands above your head you would need to do that each time.

How do the techs measure the distance to your arms?

with a measuring tape?

What is the bolus?

They take an x-ray each time to make sure you are aligned?

Even though you have tattoos?

What is the purpose of the tattoos then?

Do they keep the mold at the center for you? Or do you take it home each night?

So, then they have molds for each patient?

So CoyoteNV, the mold is not the key, but it sure seems like a different world from what I have had.

I did not have a mold. Tattoos were aligned. They also took photos which were referred to a couple of times to check that my hands were in the same position. Xrays were taken at the beginning of each session for positioning.

I feel fortunate that while I have three peeling areas, they are only mildly sore from time to time. Then I wear a bra so the weight of my breast doesn't pull on the irritated spot. My heart goes out to you who are suffering.

Yikes1-They measure with a tape measure from elbow to elbow.  I think they use the x-rays to double check the alignment, and have once moved me after those x-rays.  I will ask them tomorrow why both tattoos and x-rays.  The bolus is a thin piece of plastic that is molded to my skin to draw the radiation to the surface.  I have temporary expanders so not sure if that is why I have that, but I will ask that too tomorrow.  They keep the molds there-there are many people's molds hanging in the room with tags on for each person.  They also keep the bolus there.  My treatment is at my local hospital which is a Mayo Clinic Health System that is affiliated with Mayo Clinic, but the radiation oncology department is actually part of Mayo Clinic, Rochester. 

Good evening all,

The head mold looks very much like a low dog bowl shape. Just my head fits in it, turned to the left.

They take films on Friday to make sure I am still lined up correctly.

I have a bolus M-W-F one week, and the next week T-TH.

I have 4 tattoos 3 mid chest to line up and place bolus, 1 on my side under my arm area to tape the bolus on the side line. And assorted Sharpie marker x's and squiggly lines down my side. Very festive some lines are red, and the x's are green. Glad it's winter!

I just can't wait until this is over.