November rad girls check in here!!

Hi all and happy thanksgiving--especially those in Belguim.

Today was a double whammy. chemo in the am and rads in the pm. I got the snow tires put on in between so I felt great when i left the "cancer center" which is just the radiation place and saw it snowing. I decided that I was going to personally thank all my caregivers today because truly i am thankful for them. I thanked the chemo nurses, my med onc, the rad techs, the jerk rad doc, and the plastic surgeon. I felt good.
Nevaeh, you are not a wuss. We treally are going through the wringer. I hope your dh doesn't ever have to go through anything like you are. Men just don't handle pain the way women do. During My recent visit to the breast surgeon, I mentioned that I felt I was being a wimp because of whining about rads. She said, you are not a wimp. Your nerve receptors are all out of whack due to all you have been through, I tend to agree.



Kiwikan, I have never heard ot the vein dilation as a side effect. Since the rad people don't believe anything is caused by rads, call your med onc and ask. It may be an allergic reaction to something.



I too have been snippy with some and grouchy with all. I have decided that it is due to the fatigue. When I am exhausted I just don't have the patience with others' studpidity. Thay probably aren't any more stupid, i am just less patient. That is ok. That is why I am taking off time. i defnitely don't feel as sick as during chemo, but I know I am not being nice to folks and unsually grouchy with my students. I think it is the fatigue. When I am tired, fatigued, I don't have the same control over my mouth. i don't think we should minimize these effects like the rad docs do. They are real and we aren't paranoid or wusses. We are going through radiation treatment and it isn't easy. I agree we need to educate our associates and others we know about how it feels.



Happy Thanksgiving all.
steffi

You

Hey girls - Happy Thanksgiving to all of you in the USA - good for us all to make it, so make the best of being with your families and friends.

Have had a spooky time this week.

Saw second opinion radio onco, who went right through my medical history and symptoms. Being of the "inscrutable" race and a doctor (therefore all ranks will be closed and backs protected...), he nevertheless not only looked stunned at my chemo regime (and he thanked goodness for my general physician and pain specialist), but was incredulous about the 10 rad sessions had had elsewhere. He outlined the full picture of treatment and post-treatment side effects, facts, figures and probabilities. This was a first. My wbc/lymphocytes v low for me on Tuesday - another test yesterday (after Oral Impact diet) has put them up, but I have immunosuppression due to TC, which has made me totally vulnerable to radio effx to lungs and larynx in particular. This was not taken into account by the previous specialist, who took no precautions whatsoever to protect me - and, as you know, dissed my cough as "impossible". Well, it wasn't.

He re-marked me, did CT scan, and gave me various pills and potions to help ward against effx (Vitamin E and L-Glutamine x 3 perday), plus an appetite stimulant. (Whenever I am ill, it's the first thing that goes, and have lost two kilos after 10 treatments). He has opted for highly focused Conformal Therapy, am strapped up for first time, and wedges are used on machine to direct beams properly -oh and told to keep chin back to protect larynx. None of this done before.

Will have weekly blood test and Neupogen if necessary, and will see him every week - plus an ultrasound after 10 of my remaining 20 treatments. I really am looking forward to seeing his report. It will require the training of a senior diplomat to write. The CT shows the outer lining of my right lung in particular is damaged. I will see him Friday pm to discover the extent and whether it is either treatable or reversible.

What freaks me even more is that there is a so-called specialist using a deadly regime on patients every day that might not only compromise their health in the short-term, but possibly kill them.

Am particularly fortunate to live in a city where don't have to go far for another opinion. But, I'd travel to the ends of the earth with these concerns. Particularly if it's a matter of life extension.

Do not take no for an answer! It's your body telling you what going on and you have the right to the best possible treatment fit as an individual. Trust your gut instincts. Doctors are also human, and can get things wrong.

And for those of you with skin probs., am sorry (have had psoriasis for nearly 30 years and realise how sore such things can be). Have been lucky in this respect so far into radio. I use the rad gel three times a day, don't use deodorants or scented soaps/body lotions etc., water and pat dry only, and at night I cover my chest with pure Vitamin E oil. Have used this since my surgery and you honestly need a magnifying glass to find my breast incision! Just make sure you wipe it off before your treatment with warm water. I only use Victoria's Secret bra tops, and do not put any synthetic fibres next to my breasts. And let them hang out of the bedcovers at night!! I have to use airconditioners here, but you guys up north have real cool air!!

Take care everyone.

Hello,

I really don't see a problem with putting it on right way.Thats what I've been doing,I"m on #16 and so far so good.The only bit of advice I my have is to make sure you put it on all the way to your collar bone .I have a little bit of a blistered area above the boob where I was not putting the aloe vera gel.

Sorry about the clogged drain,what a bummer when you have a lot of dishes to do

   Terry 

Hi all

16 down, 17 to go.  Had a long discussion with the rad tech about SE and who is most prone and why.  She said the irritation tends to occur more in large breasted women because the radiation acts differently in cracks, crevices, and uneven areas in general. For example, she said if we were having a completely flat area done like my tummy, there would probably be no irritation.  She said the armpit and the underwire area are most prone not because of lack of air flow or rubbing, (like I thought), but because of the way the radiation beams act there, then the rubbing aggravates it.  I askes how it was looking because it feels fine and is only slightly pink, if I look at under the light.  She also said this will be the one time in my life I will appreciate being small breasted because having half of my TX done and having no SE probably means I will get through this with none.  She said she has radiated a lot of boobs and is confident of this.  I hope she is right. She also had not heard of Sween Cream but thought it was working well.  She also said anything was fine anytime to put on like the sween cream and aloe, just not in the mornings before I come. 

On the downside, my son was in des moines with a friend and met me and my husband for lunch after my dr. appt.  We each left in separate cars and my son called us about 15 minutes later and said they crashed on the interstate.  Thank God no one was hurt, but scared me to death.  And today the traffic was terrible on the interstate so they were lucky they landed on the mediun and not in a traffic lane.

Hi Pezzz,

We are all scared of all this stuff with cancer and treatments and you are entitiled to be scared. Your first meeting will usually include a history taking and the doc looking at you. Then they schedule another time for testing, measuring and marking you up with a marker (just a sharpie). It feels like a kindergartener scribbling. Then they ask you back in a week or so and put on tatoos which are just spots so they can line up the beam in the same place everyt time. After that it is usually every day just zapping, takes about 10 minutes. It is a good idea to start putting cream on your breast area, around, underneath and to the side from the first zapping session even if you see no redness. Good luck. We are wishing you well. It is nowhere as bad as I feared.
Steffi

Steffi

Pam,

I solved the no deodorant thing by dabbing on a bit of Purrell. It takes the stink away and the rad crew can't complain

Steffi

Its nervous time for me.  The process begins tomorrow for real.  Looking at all your side effects-YIPES!!!!  I work in the Civil Division of the local court here in San Diego.  There are alot of stupid people we get as our customers.  Im impatient with stupid people anyway.  We get tenants who give all the excuses in the world and then some about not paying rent while the landlords are getting them evicted.  Unfortunately, they are allowed to have their say.  So am I doomed to get MORE impatient ? 

Its the holiday season and alot of people are more irritable this time of year so maybe I will fit right in.  At least I will be able to take time off "as needed".  If I feel like calling in after my zap I will, glad I go in at 7:30.   Remember those patio lights that zap bugs?  Thats what this reminds me of.  Hopefully I wont hear anything.

Im worried about burns-am fair skinned, and all these people with other se's. 

This is my last day to rest up and so I shall.  May even take a nap.  Maybe it wont be too bad but it sure is scary and it lasts so long.

labhusky...I really, really understand how you feel about STUPID!  Here are a couple of bumper sticker type thoughts:

"Stupid Should Hurt"  and "You Can't Fix Stupid"  Yes, you will truly need to hang on tight in the irritation department.  I'm not too tolerant, normally.  My excuse now is I'm suffering from RAD RAGE!

You won't hear a sound like a bug zapper, but you just might have the feeling that's what's happening.  I'm starting #10 on Nov 26.  That morning before zap, I go for routine PAP.  I no longer think in terms of "routine".  Especially since last November I went for my "routine" mammo.  Often wonder how the heck I got HERE! I went to a new hair stylist yesterday (that can be scary).  Mehgan did a great job.  I also had her wax my brows.  When I left I felt oh so

Beee-U-Teee-Full!  Sure lifted my spirits.  FYI:  I'm going to start a new topic (no intent to replace this one) pertaining to the complexities of dealing with the breast cancer - diabetes combo. Watch for that soon.  In the meantime, I'm curious to know if for those "only having to have radiation" sort of resent the word "only"?  Gosh yes, I am more than grateful that I have not had to go through chemo, but I don't like it when folks maginalize and minimize radition therapy.  I personally have discovered there IS more to this treatment than the rad gods want to tell you about.  Comments about that?  Here's wishing all goodness.  My angel thought for today is "Purpose".  Ask yourself what your day's purpose is.  It's amazing to make that realization.  You did GREAT!

Fondly, Ruth

Hi,

I actually started the end of October ... have seven left of 30. I am very fair skinned so worried about burning. I started using the 100% aloe vera gel right away ... added hydracortisone with aloe last week (also over the counter). I bought and wear only the Wacoal cotton shelf bras (Macy's) unless I am exercising and then I wear a sports bra. I have a light pink rash now - nothing really bad. But I think that the secret to success lies in drinking lots of water ... I pour eight glasses of water in a pitcher in the morning to make sure that I at least drink that much. I have a big honking hole in my breast ... first lumpectomy was July 3rd, re-excisional lumpectomy was Aug 7 with eight weeks of packing the wound so that it could heal from the "inside out". Needless to say I have a most interesting scar ... so I was a bit apprehensive about how it would react to the rads ... but so far it is ok. Oh yes ... I stopped swilling wine ... that probably helps too!

D  

Kiwikan,

I am an only rads here, and have used that term myself.  A friend of mine went through this about 4 years ago.  We both had DCIS and I had Grade 3 comedo type mostly.  I think hers had some too.  It helps me to know her since our treatments are similar.  Now, shes with Kaiser and she didnt get an oncologist which surprised me.  Her surgeon made all the recommendations.  My onc is going to try to get me on tamoxifen after rads is over but Im not too big on that one.  Too many side effects and strokes are in the family.  My friend isnt on tamoxifen either.  And, get this.  Another lady I worked with had DCIS in both breasts at the same time.  No tamoxifen and she has an onc.  I sometimes feel that these treatments are a crap shoot but am willing to do "only rads" since thats what my friend did and shes doing well.  She is 7 to 8 years younger than me, In her close to mid 40's.  Im 51.

Well, 1 down and 34 more treatments to go!  I just got home from the first treatment and so far, so good.  The only thing was that we went out to Olive Garden for dinner when we were done and I just couldn't eat.  What's that all about?  I love their soup and breadsticks and couldn't finish either one of them!  Was it all in my head or what? 

2dogsenburg ~ I'll second that motion, cancer does indeed SUCK!

To those of you who are using creams and ointments - I asked my doctor and tech about using anything today and they all said not to use anything until I start having some kind of a reaction (pinkness, itching, etc.).  I'm still going to use the aloe vera tonight anyway!  I trust you more than I do them!

Hang in there and we'll all get through this!

Debbi

Good evening friends.

Finally over the hump... eighteen down and seventeen to go. I had a nice four day break for Thanksgiving which was a real gift to my skin. It has red bumps which come to a head like a pimple and then turn into sunburn like blisters. Today, Mr. Personality, my rad onc finally agreed that it was a little irritated. Perhaps he thinks that if he minimizes my distress it will diminish. I have decided that no matter what i tell them, the same treatment will continue. This just has to be something that I will get through. It is a kind of Grin and Bear it.



RE only rads. I admit to being jealous of those who have "only rads". But then I stop mysefl and think, what is the worst part of this disease it is the fears that it engenders. There are so many people, including me a year ago, that really don't understand all the nasties about bc. It is a chance to educate others. My education re lymphedema was a booklet given me by surgeon. She also gave me pretty pink booklets on, surgery, reconstruction, chemotherapy and radiation therapy. That isn't enough when one is crazy with fears and "what if's". To be perfectly honest I find rads much more difficult than chemo. Perhaps that is because it is at the end of a long road of treatment.

To those of you just beginning, keept the lotion coming. I have been told three times a day whether it looks red or not. Somedays I put it on four times if the area needs cooling.

I wish all you a safe recovery and a easy treatment.

I lived thru the first zap!!!  It wasnt bad and wasnt expecting it to be.  Its just the cancer thing as a whole.  As I am only rads, I sometimes feel insignificant around people who have been thru alot more than I almost embarrased to tell them what I went through.  But that said, I sure did my share of fears and tears in the early stages and I now have a new worry as well.  "What if it comes back worse."  Then I will think back to this dx and look at it as a cake walk.  As it is, I do count my blessings!!!  I feel that somehow, it was a wake-up call to me.  I hadnt had a mammogram in 15 years when my DCIS was caught very early.  The reason?  they hurt.  OK, Im done with that reasoning now.

Hi all

Glad to see everyone's rads are going smoothly.  I am definately pink, but not irritated.  

I brought my workout clothes with me today too. I have 18 down, and 15 to go.  That is cool that your center keeps the lotion right there for you guys.  I am still putting on the aloe and sween cream 3-4 times a day. 

hoping the weather holds out for 3 more weeks...