October 2010 rads

Hi Debbie Lynn-

we actually have the same name. and I am not that far-in CT on the NY border.I just did #6. had heavy feeling in breast and swelling after 2 txs-they told me it was too early to feel that way. Over the weekend without tx, it got a little better. When I started up again on Mon, it flared up again. I have expander in place and the swelling was obvious and more swelling in hand. Saw PS who was considering taking alittle fluid out of expander but doesn't really want to do it on rad skin and would need antibiotics, and if it got infected would be a mess. My wbc count is also heading down after a week, so don't really want to take any chance w infection. went back for OT today and they did lymphatic drainage and I did it last night and breast is softening a little and the awful presssure let up a little, so am going to hang in there and see if this helps. My chest is achy. I would let your techs, nurses and/or doc know. They know your tx plan and history and can tell you if this is expected. And they can probably offer you suggestions how to best manage your response to rads. Hope you feel better.

fayebu-I never thought to look at Westchester-it's ab 35 min from me. I can't believe tech said that to you. I have a friend who threatens to write a book "you can't make this sh__ up." My favorite line to hear is "Wow, you don't look like you have cancer". I would have thought that the fact that most of my hair is gone w bald patches and now I have purple marks that seem to peek out of every shirt I wear, etc etc might be a clue. This journey has been an experience.

designer mom-I wish in some ways I had looked more at face down, but I got to the point where I felt like I was second guessing myself and worrying about everything, and felt so lousy after chemo that I didn't feel I could deal with any commute. I liked the idea that it offers more protection to heart. Hope you are doing well. If I remember, you are further along in your txs?

Has anyone had counts dropping w RT.  My white count had finally come back after chemo and now after 1 week of RT is at low normal and am worried that by next week it will down further.

At least tomorrows friday, so we will all have what for me is a very needed weekend break.

Thank you all for sharing. It makes this process easier.

Deb

I haven't had my blood work done for a while (glad for the poking reprieve!) but was advised to keep a high-protein diet.  That may help in general.

I've had 15 so far and now my skin is getting burned up in patches.The itching was driving me crazy,so the nice rad. tech gave me a saline solution and told me to put on compresses soaked in it, and then airdry the breast.So did that yesterday and itching is still there, but more manageable, and now this whole weekend will be devoted to saline compresses! I see the doctor on Tuesday, just hope there is no infection--the skin  affected is mostly under the arm and under the breast.

I have been putting Lubriderm which seems pretty useless, maybe will try Aquafor now...Deadlanguages,were the boosts for a shorter period than the time taken for a regular rad zap?

CT124-  I work with first grade.  I am an assistant.  The kids are really cute and had a wonderful time today parading and celebrating Halloween.  I stopped chemo Sept 15 and started Tamox on Oct 1st.  My Onc seemed to want to time Tamox with my period.  But, I was soo irregular and spotted so much on chemo I couldn't give an accurate answer about my period.  So, I think she just decided on Oct 1st.

Ranafazal and Bethen - I had an itchy rash after about 10 treatments; my Rad Onc recommended 1% hydrocortizone OTC; that helped only a little; a friend suggested I get a prescription so I got 2.5% hydrocortizone; that helped a bit more but I was still waking up itching. Then my friend recommended prescription Topicort; it took some persuading but I got a prescription for generic. It's a miracle drug! The itching was gone that night, immediately. I put it on 3x daily (the directions said 2x daily). The rashy area cleared up significantly and doesn't itch. I've kept using it and noticed that area is significantly less red than other areas of my breast, where I'm using only aloe and Eucerin lotion. After 28 treatments, the rest of my breast is very red and uncomfortable; so yesterday I decided to try to using the Topicort on more of my breast. (I'd slather it on but it's a small tube.)

I start 8 boosts next week. The Rad Onc marked the area and I was told it will be only one shallow burst (vs. 4 that I get now - 2 in 2 different directions).

Betsy #2; 

Ask your onc for hydrocortisone for the itchiness.I too have the red bumps which he says are hyper pigmentation of the skin and some itchy areas and that's what he gave me.  Helps a great deal. 

Even though I am Canadian (live in the US) I'm not sure that I could handle the Canadian protocol (2xday).  How do you do it!

Good luck, Heather

Heather-  I completed 15 of 30.  I am suprised the first 15  went as quickly as they did.  I am sorry to hear about the nausea.  That really is miserable.  I have dealt with body pain of one sort or another since my bilateral mastectomy.  I want to ask for a referral to a PT or OT.  But, I am sick and tired of doctors and their offices.  I am hoping once rads are over I can stretch and strengthen on my own.

CT-  My daughter is 16 and plans on trick or treating all day tomorrow!  But, there is nothing better than a little kid all excited about Halloween.  They have such a delight in the dressing up and getting candy.  I want some of that kidn of happiness back in my life !

hmh/Heather.... I completed #18 on friday and have 9 left.  I am now seeing the first of any reaction at all.  It is just a rashy look and alot of new freckles on my upper chest.  My doctor says its the hyperpigmentation and will go back down once I finish the radiation.  Other than that, he says that my skin is holding up very well.  No tightness or anything.  I am feeling very fortunate.  I use alot of that yucky Aquaphor every night and also use that Special Care Cream alot during the day.  The rash is minimal so far and not at all itchy but I have decided to combine some Cortisone 10-Plus with the cream during the day.

I didn't think that I was having any fatigue, but then I flew from Chicago to Seattle yesterday.  Stayed up late (Seattle time too) with my daughter and family.  Felt fine when I went to bed, but then slept in til 9am this morning.  OMG!  That is 11am in Chicago.  I think I must have slept 9-10 hours.  That is definitely not me.  We've been out trick or treating in the rain today and will be going all night having dinner at friends, making a big brunch tomorrow morning to host more family and then hopping on a flight back to Chicago in the afternoon.  I bet that I sleep all the way back.  Have to get back home for radiation on Monday.  What a short leash we are all on these days!! 

I feel like it is beginning to wind down for me as I am in the single digits now.  Only 9 left.  I really, really hope that my skin does not break down too much more.  I still have my TE's and want to get them swapped out ASAP in the spring.

Good luck to everyone in treatment.  Hang in there.

My RO is a huge believer in Aquaphor, the only thing he wants used. I protested as it feels like greasy bookpaste and has petroleum and mineral oil in it. He finally relented and allows me to use Aloe (only from a fresh plant or it has additives) and Calendula Cream from Boiron (Whole Foods). So far so good. Okay, I have a new weirdness. The top of my foot felt itchy yesterday and now has a bumpy rash. Now what? Is this from Rads? Chemo?

designer mom and MHP70

it does supress immune system. My counts were finally heading up after chemo and now wbc heading down again. RO says it is usually ab week 2 where if it is going to go down, will really happen. I am also loosing hair again. didn't lose all of it from chemo and was getting new growth as well as exisiting hair growing again and now it is falling out in clumps again. Life just stays interesting. I hate aquaphor-may pick up some of the cream you are using-asked RO about what they will allow. Initially was told only aquaphor, but last week was told these are all ok

Oh Betsy, that makes me sad and mad!  You do not deserve so much trouble, I am really, really hoping for everything to go smoothly in getting this better!!!  I have tons of pimples on my pathetic stubbly head, will keep a closer eye.

No one said a danged thing about MRSA to me.

She said, "You'll like it." Today's appointment was my first of eight boosts after 28 full rads. Before getting on the table, I asked the techs to explain exactly what was going to happen today. After telling me about the procedure and explaining that it was only one exposure, she said, "You'll like it." What a poor choice of words.I told her I would never like it; that I hated every second I was in the building from the time I walked through the entry doors.

A friend I'd known for 24 years died of cancer in this hospital last week.His funeral is this afternoon.

Ah, BetsyP, that just s*cks!  Isn't MRSA a form of staph?  My sister got MRSA while in the hospital for 5 months following a disastrous reaction to chemo, and actually everyone I've ever heard of getting it contracted it in the hospital environment.  Very frightening, indeed.  Please let us know what happens once they get the final report. 

19 out of 30 done today--total time was 2 hours. I went back to "the room" for the treatment, had yet another x-ray, and it seems my marks had faded, so they sent me back to the waiting area, then had to go for another simulation and get remarked, (and scolded for letting the marks get wet, even though they're covered with a clear sticker!) then back to the waiting area, and finally another x-ray and the treatment.  Honestly!  I was so frustrated that I lay there on my back with tears pouring out.  

AICa, I'm beginning to understand what you've been saying.  I've accepted the total loss of dignity and have tried to be the most co-operative patient I could be.  I lie down on the table for the treatments and bare my breasts (yes, both are bare!) willingly, just wanting to get it over with, but hell, I'm the one with breast cancer here!  So don't blame me if your stupid marks wear off after over 3 weeks!  I do bathe, and I religiously apply the aquaphor mess every night as directed.  My breast is a red rashy mess and I'm tired, so don't blame me!  

Thank goodness for you all!  We know all of us can vent here and you will understand!

This too shall pass---good wishes to all of us!

Kathy

Betsy-  Glad you got an appointment with your regular doctor tomorrow.  I can't imagine that they don't put you on some kind of antibiotic right away, especially since you are probably immune suppressed.  I'm sure they are doing a culture and sensitivity from the sample they took.  If for some reason it shows that other antibiotics are more suitable, they can always switch your meds.  I hope your doctor gets you on some treatment quickly.

QCA-  So sorry about your insensitive techs.  They are lucky it wasn't me!  I would have NO hesitation telling them that THEY put the marks there, it isn't MY job!  It is a given that you are going to bathe.  Perhaps they should do their job and reapply them more often!!  When pushed by stupid, insensitive hospital personell, I have actually said "I will gladly change jobs with you.  You can do my chemo, rads etc...I'll do your job."

AICa-  I totally get what you mean about hating to be in the hospital.  I try to zone out about it.  Today I had to go up to the chemo floor to pick up copies of my records (which were not ready AGAIN because uncaring hospital personell!)  It was the first time I returned to the chemo ward and I felt like the wind had been punched out of me.  I wasn't expecting that.  I practically scurried back down to the radiation floor!

Having said all this, I met with my RO today.  I adore him.  He is smart, sensitive, not only about the harshest treatments (even insinuated doctors may prescribe the big guns due to liability).  AND he is funny.  I got lucky!

Been out of town the past few days.... yes in the midst of this stuff, I did a quick weekend get-away to see my daughter and family in Seattle.  Of course, I had to rush right back for rad appt today.  Be soooo glad when I am done.  20 down/8 to go.

CT124/Deb... I am still using that nasty Aquaphor every night.  The Special Care Cream is something that my RO office supplies "free of charge", LOL.  I think it is a general hospital cream but does seem to be doing the trick.  It is manufactured by company called Bard.  I have a little hyperpigmentation (new freckles) that just started a few days ago.  RO says they go away later.

I still have my TE's and they haven't changed during radiation.  They already seemed pretty tight before starting radiation.  My PS would have preferred that I did one more expansion before radation but I just didn't have time and felt already expanded beyond what I was planning.  I think I was told a minimum of two months after radiation before I could have the exchange.  I plan to visit my PS in January and get an opinion about any further expansion and exchange timetable.  I was told to expect about a 3-week recuperation after the exchange so I have not figured out when I want to make time for that.  I have a friend who kept her TE's for almost a year after chemo and never even had radiation.

Betsy....so sorry about your having to deal with that MRSA infection.  That is just not fair!!

Heather...that "dignity robe" sounds like a great idea.  I am so thankful to have such wonderful female rad techs.  They have been so compassionate.  The RO is also great and that makes this whole experience much easier.  Several times I have witnessed former patients stopping by the office to say "hello" to the staff and get some hugs.  Is this strange?  I did get many referrals for this office before I started.  I guess they were right.