please help

geebung

Sue, all my love and strengthening thoughts and wishes for your tx - if your wbc's are up enough. If not, another week will help your body. I can't imagine how hard this is for you but I know it must be so, so harsh and seemingly impossible. My heart aches for you.

Lots & lots of love and good thoughts to all of you who are having treatments  - Karen, Nancy, UB, Mia and anybody else here who is doing it tough and to all who are feeling a bit fragile or sad and to everyone who feels pretty good!

Hugs,

Jane xxxx 

sueps

Thankyou sisters xxx I love you all and the strength you give me xxx

I think work tires me out maybe its that ... I am on my feet doing million things at once for nine hours without a proper break ...so maybe maybe....

Well I do not want to go today ...but I know in my heart I want to anialate the stinking rotten evil ugly BOOT FREAK OF A FACE !!!

I dont know though ...I am that tired I would rather stay at home and slob lol....

I HATE HATE HATE HATE HATE HATE HATE HATE THIS

A million hugs and a zillion love to ALL of you ...thankyou  for being you and being part of my lifes tapestry.... you are all truly remarkable xxxxx

Wren

Hang in there Sue.  They'll check you out and if you need to skip another week, no big deal. You'll be OK.

I remember you mentioning less steroids or a new med. Perhaps that is why you are more tired now too... you were going like gangbusters for so long that you are crashing a bit more now without the steroids--and that is actually good because now you can catch up on some sleep--and that will heal you up more too.

I'm thinking of you right now!

Kick bootface's ugly butt!

Goooo Sue!

my3girls

Checking in to see how our dear Sue is doing.  Did you go today Sue...were your counts ok for tx?  I hope you are back and resting right now.  I have to agree with Wren...I think the fact that your steroids were reduced...you are now feeling like you should.  You were going crazy before and doing way too much.

Check in with us Dorothy!  We love you!!

How was the meatloaf Mel?  I actually packed it for lunch today.  Lot's of broccoli too, and potatoes and carrots.  Some fresh strawberries for dessert.  I can't wait for lunch...starving today!! Only about 15 more minutes!  I ran this morning...so my stomach is saying feed me!!

Love to all...gotta run, I'll try and check in today later before I leave work.

xoxo

Lisa

livesstrong

I'm checking on our dear Sue as well.  Hope she is resting.

Well, got a call from UB today at work saying he was having difficulty breathing.  He called our onc and he said to come in. The onc was in his office that is a lot farther from our house so I left work and drove UB there.  He is not sure why he is having this problem so instead of waiting until after his next treatment the onc decided to do his CAT scan now.  So he's going on Thursday.  Poor guy has to drink 3 bottles of the vile concoction they give you before the scan.  Hopefully it will show the tumor has shrunk and nothng more.We're hoping the shortness of breath is just a s/e.  Keep your fingers crossed ladies!!

bbl,

AE 

my3girls

Oh...AE...darn it...poor Uncle Bill...he has had enough!! GRRRRRRRRR...darn bootface!  Sending positive thoughts and prayers that Thursday's CAT scan shows nothing more than a shrinking, tiny little bootface!!  I hope he feels better and the shortness of breath is just a bad s/e.  Does he get anxious?  Maybe anxiety...that can cause shortness of breath.

xoxo to you both!!

Check in dear Sue!

xoxo

Lisa

portiasproudmom

Just checking in to see if our dear Sue has posted yet.  Where are ya Sue??  Resting after kicking some bootface hiney, I hope!

Poor UB!  I'll say lots of prayers between now and Thursday, AE.  Hopefully it's just a nasty se and nothing more.  Stupid bootface!!!  I hate it more every day!!!!

You're such a healthy eater, Lisa.  I need to follow your example and alter my diet a bit.  I eat lots of fruits and veggies, but I still eat a lot of high fat and high sugar foods. 

bbl.

Hugs,

Karen

my3girls

Karen...trust me...I splurge!! I was never a big sugar eater, but I have noticed lately...I am craving it. I am really trying to avoid it..it's hard.  I used to eat more healthy than I do now.  I wish I had the will power that I had years ago!

My new thing is to try..and I say..try..haha..to avoid any white flour products and sugar.  Not easy!

Sue..where are you??????  I hope fast asleep!

Still at work..will check in later!

xoxo
Lisa

Ulla

hi dera sisters..

checking on our dear sweet sue,,i hope she is resting now,,,

oh poor UB ..my all preyrs for u to feel better,,,

sisters,,am totall crashed

geebung

Also checking in to see how Sue is. Lots of love to you Sue and I hope you are resting. Will you be taking a day or so off to give yourself a break?

AE - my love and best wishes to you and UB. I'm praying that the breathlessness in just a s/e or a bit of stress.

Ulla, you have been through so much. It's not surprising at all that you are still so tired. Your body (and mind) need to rest and recover.

Lisa, you're inspiring me! I am just recovering from some weird virus and have little energy. I'm going out to buy some healthy food and do a gentle round at the gym. 

Karen, you are still being zapped (and all the other crap you've had to endure) and are probably feeling so tired. Don't be hard on yourself for having a sugar hit - I'm sure that when when your treatments are over, you will start to feel better and you won't want the sugar so much. 

Hugs to everybody,

Jane xxxx 

honeygirl

Hi Sue! I was hoping to come here and get a report from you on how today went. I hope you are OK , and just tired and resting.You know , I was thinking today , how I felt last July as my tx was coming to an end. How I would just cry and didn't think I could make it to the last one. And I think of you and all you have already endured , and I want to cry for you Sue. I wish I could physically  help you and give you some of my strengh right now. I hope you're not feeling terribly bad. I know hearing again from me that you are almost at the end of this dreaded tx. isn't really a help ,  But know that we have all come through it , and so will you Sue.My prayers are with you sweet Sue. Hang in there. Much love to you and the boys.xxxx Melody

honeygirl

Hi AE , so sorry to hear UB is having SOB. Lisa is right , when I would have anxiety attacks , I would get sob , it was horrible. And I know some chemo causes it to. Especially if your red count is low. Prayers to you UB and AE. Hoping for "shrinkage" on Thursday. xxxx Melody

Hi Lisa , the meatloaf was very tasty. I make mine in the microwave. It gives it a crunchy bottom , which I like , but the rest is very moist. I made "kale" to go with it. I never had that before. I like it. O/h doesn't. Oh well more for me!lolxxxx

Karen , so glad to hear you are down to # 8! Soon you will join me and Lisa on the tamoxifen train! Hope you're not to tired.

Yes , we eat alot of chicken too. Let me know of any different things to have. Getting tired of trying to think of what to have.xxxx

Ulla , hi honey , go get some sleep. Soon you will have your strengh back. Hugs to you.xxxx

OK Jule , you can't come here talking about Sparkly thingys , and not explain! I love sparkly thingys , and I have no idea what you are talking about , but I want one!lol

Hows Libby doing? Boarder Collies are soooo smart. I would love to have one , but I don't have to energy for one! Hope you two are bonding well. I'm so glad you took her in. I'm sure she feels very much loved!xxxx

Hugs to everyone , hope you're all doing well. Hugs and prayers to you all.

Oh Nancy , I like that "one for the gipper"! Hope you're not having to bad of se's either.xxxx

NancyD

Mel,

That was just my pep talk to Sue. I don't know if she would get the Gipper reference, but I knew someone on the board would ;-). I'm actually doing pretty good after #2. Cycled through the se's a few days quicker than #1. My taste is back, but still have the moving around pains from the Neulasta.

I'm on and off quickly tonight. Stupid bossy-brother hasn't filed his taxes, yet, and is commandeering my computer until midnight.

'Night all. 

my3girls

Nancy...I am so proud of you! You really are doing well with your tx's. See...everyone is different and responds differently to the tx's and experience all kinds of different s/e's. Glad to hear you are doing so well. Hope your brother got his taxes done!



Jane..go buy that healthy food. I just try and eat more whole foods, and stay away from processed foods. Did you make it to the gym? I am glad I inspire you...and I am so thankful that I am actually feeling so good to get my butt moving and back on track. It feels good...I have so much more energy in the morning after my run..and I am sleeping a little better at night. It took a long time getting here!



Mel...meatloaf in the microwave..never heard of that! I love meatloaf, but I don't make it often..since Olivia is not that crazy about it. I have not tried kale. How do you fix it? Girlfriend..let's get our Sunday lunch planned out!! I am getting very excited to meet and talk, talk, talk!! haha.



Ulla, Sue and Karen....you ladies are supposed to be tired and needing rest! Remember that..you are where Mel and I were last year. Take care of yourselves...you will have your time soon...where your energy will return.



Much love to all that I have not mentioned. One of our flights just landed..have to run.



Where is our Sue?? Sleeping like a baby...I hope!



xoxo

Lisa

sueps

Hello Sisters xxx



I am here and feeling sick and energetic after the silly steroids . Thankyou for all you kind messages xxx



I had a traumatic day yday...after 6 attempts screwing the needle into my damaged veins they managed to get it in to the vein on my wrists near my artery...





I do now know what has happened to my fonts on this page ...I was sleeping most of last night and David kindly cleared my hard drive up and took every sigle key off of my laptop to remove all crumbs hahahahahaha...



Well I have been working today a 7 hour shift and then I have done 2 hours of gardening...needs about hundred out there...



I had an argie with my ONKYS partner...APPARENTLY in the UK you are not listed to have RADIATION if your tumour is under 2 cm....they had a meeting and I am not eligble...I told her he said my surgeons would go ape with hime if I didnt have it and I have no post op tx for tip neg...PLEASE WHAT DO YOU ALL THINK...I am sure my tumour was 2.1 .... also I had 2 clean axillary and 14 clean nodes... BUT IT WAS RIGHT DEEP MARGIN ON MY CHEST WALL.Also CHEMO DOES NOT WORK FOE A RE CURRENCE ON CHEST WALL ...xxx




Sorry for messy ramble xxxx freakin bootface your damn right evil xxxx

sueps

(((((((AE UB))))))))))))

I am praying like MAD MAD MAD MAD ......I am holding both of you deep deep deep in my soul ...you are extremely close to me in spirtit and I wish with all my heart I lived in the US  XXXXXXXXXXX

NancyD

Sue, I've been doing research on rads ,and yes, they do reccommend rads after mastectomies. Here's a link to the NCI's results from a trial done years ago.

http://www.cancer.gov/clinicaltrials/results/postsurgical-radiation0106

In fact, this was published in The Lancet. I'm surprised they'd even question it. Can you speak to a radiology oconlogist?

In another study done a few years later and on a smaller scale, they found the quality of the radiation was significant, too.

http://www.cancer.gov/clinicaltrials/results/postmastectomy-radiation0106

What that says to me is that I'd better not just go to a run-of-the-mill radiologist...but one that specializes in oncology, and maybe even breasts. Although I probably won't be ready for rads intil late summer/early Fall, I plan to start researching the best in the NYC area now and interviewing them, even before I do ps for reconstruction.

lvtwoqlt

Sue, keep fighting for the rads, my mom had a single mast, I think she had 5 of 14 nodes positive. she had to do chemo and rads. She is doing great.

I just got some great news, my mom and I are going to be calendar girls. there is a local group that does a calendar with BC survivors from the 3 county region and I just got the call that they want us in the calendar as a mom/daughter group. We will be taking the photos next week! You can check out their site and see some of the previous models at www.throughhealingeyes.org. The calendar will be released this fall.

Sheila

sueps

Nancy...I am way going to get some advice on the rads...I REALLY WANT THIS TREATMENT ...whats the point of doing chemo to do as much as you can...to ease worry etc and not be enititled to rads!!!

Well the time before the oncky said I could opt out of rads not in to rads ... I dont think they really communciated ....I cant shop around Nancy ..it is the NHS  xxxx ...Its gonna be another 4 weeks before I get to see him as nxt week I am just going fro chemo xxx

Sheila that is absolutely fantastic news ...... what month will you and your mum be.....gosh that is really great xxx I am going to have a shufty at the website xxx

Much Love xxx 

lvtwoqlt

I don't know what month we will be on, right now I only know that we go next Wednesday to have the portraits taken. They did say that there will be a little bit of skin showing , we will be draped and no scars showing. I will give you more info later. they liked the idea of a mother/daughter couple in next years calendar. In previous years they have done the mother/daugher, cousins, and father/daughter. My mom has bought all 4 of the calendars that they have produced, I bought last year's calendar.

Sheila

livesstrong

Sue - what the hell's a shufty???? LOL

TenderIsOurMight

Hi Sue,

In the whole world, there is one ongoing trial currently studying post mastectomy radiation therapy (PRMT) in the intermediate risk breast cancer patient. It is a long awaited randomized (you get picked to get it or you don't get picked)prospective trial on PMRT, called the SUPREMO trial, or BIG 2-04.

The SUPREMO trial is a phase III trial examining the role of radiation therapy in post-mastectomy women with 1-3 axillary lymph nodes and high risk node negative breast cancer, and accrues from 2006-2010.

While it's coordinated out of Scotland I believe, England is participating through Cancer Research UK, and Manchester is listed as one of it's sites.

While I can't tell you if you should participate, I can paste their pertinent requirements and the websites. If your tumor was 2 cm or larger, grade 3, it appears you qualify. Deep margins are not listed as a criteria, as you can see below.

The aim of this trial is to find out if radiotherapy is necessary to stop intermediate risk breast cancer coming back after a mastectomy. And to see how radiotherapy affects quality of life for this group of women.

Recruitment
Starts 07/06/2006
Ends 07/06/2010

Phase 3

Who can enter this trial
You can enter this trial if you are a woman and have ONE of the following -

A breast cancer lump less than 2cm across (T1) that has spread to your lymph nodes (N1) but not to anywhere else in your body (M0)
A breast cancer lump between 2cm and 5 cm (T2) that has spread to your lymph nodes (N1) but not to anywhere else in your body (M0)
A breast cancer lump between 2cm and 5 cm (T2), that has not spread to your lymph nodes (N0) or to anywhere else in your body (M0), and is either grade 3 or there is evidence that the cancer is in the lymph vessels or blood vessels within the breast (lymphovascular invasion), or both
More than one area of breast cancer in the same breast, with the largest area at least 2cm across


(There is more information about the 'TNM' staging of breast cancer on CancerHelp UK)

As well as that, you can enter if you

Have had your breast cancer completely removed with a mastectomy (you can still take part if you have had breast reconstruction)
Are well enough for radiotherapy, and for chemotherapy and hormone therapy if you need them
Had cancer in between 0 and 3 lymph nodes

You cannot enter this trial if you

Have just had the area of cancer of removed (a lumpectomy), and not your whole breast
Had breast cancer that was smaller than 2cm and had not spread to the lymph nodes
Have breast cancer that has spread to another part of the body (metastasised)
Had cancer in 4 or more lymph nodes
Have cancer in both breasts (bilateral breast cancer)
Had chemotherapy before your surgery (neo adjuvant chemotherapy)
Have had any other cancer in the past, apart from non melanoma skin cancer or carcinoma in situ of the cervix
Know you have a fault in your BRCA1 or BRCA2 gene
Are pregnant

 
A trial looking at the benefit of radiotherapy after mastectomy for breast cancer (Supremo trial; BIG 2-04)
This trial is trying to find out if radiotherapy (after surgery to remove the breast) helps to stop breast cancer coming back in women who have an 'intermediate risk' of recurrence.

Doctors usually treat breast cancer with surgery, sometimes followed by chemotherapy, hormone therapy or radiotherapy, or a combination of these treatments. The treatment will depend on the stage of the cancer, and the likelihood that the cancer will come back in the future.

Some women who have surgery to remove their breast (a mastectomy) have breast cancer at 'high risk' of coming back. They have radiotherapy to help stop this happening. Women with breast cancer at 'low risk' of coming back after a mastectomy don't need radiotherapy.

Some women with breast cancer at 'intermediate risk' of coming back after a mastectomy have radiotherapy, and some don't. But doctors aren't really sure whether it helps or not. All treatments have some side effects, so it is important that women don't have treatment they don't need.

The aim of this trial is to find out if radiotherapy is necessary to stop intermediate risk breast cancer coming back after a mastectomy. And to see how radiotherapy affects quality of life for this group of women.

Recruitment
Starts 07/06/2006
Ends 07/06/2010


Trial design
This is a randomised trial. It will recruit 3,700 women into 2 groups. The women taking part will be put into treatment groups by a computer. Neither you nor your doctor will be able to decide which group you are in.

All women will have some treatment after their mastectomy. This could be hormone therapy, chemotherapy or both.

If you are in group 1 you will also have radiotherapy to the chest wall. You have treatment once a day (Monday to Friday) for 3 to 5 weeks. The actual treatment will take a few minutes each time.

If you are in group 2 you won't have radiotherapy.

You may be asked to fill out a questionnaire before you start treatment and then at 1 year, 2 years, 5 years and 10 years. This will ask you how you have been feeling and about any side effects you have had. It is called a quality of life questionnaire.

The research team would like to store a sample of your cancer and of your blood. They would like to use the samples in their research to find out more about breast cancer. You don't have to do this - you can still take part in the rest of trial if you decide not to agree to this.

Hospital visits
You will see the doctor and have some tests before you start the trial. These tests include

Mammogram
Blood tests
Physical examination
Chest X-ray
You may have chemotherapy or hormone therapy (or both) after your operation. If you do, your doctor will tell you about the specific drugs you will have, and how often you need to go to hospital.

You will see the doctors again before and after your course of radiotherapy (or at a similar time if you do not have radiotherapy).

If you are in group 1 you will go to the hospital every week day for 3 to 5 weeks to have radiotherapy.

Rarely, some chemotherapy drugs (known as anthracyclines) or radiotherapy can cause heart problems in the long term. To find out more about this, the research team will take blood samples from about 1,000 patients in this trial. They will measure a certain protein to see if it can help them spot early signs of heart damage. If you take part in this 'cardiac sub study', you will also have a heart ultrasound (echocardiogram, or echo) and a heart trace (ECG) during treatment and at 6 months, 1 year, 5 years and 10 years.

After treatment, everyone taking part in the trial will see the doctors and have a physical examination once a year for 10 years. You will have a mammogram at least once every 2 years for 10 years.

Side effects
The side effects of radiotherapy depend on the area of the body being treated. The side effects of radiotherapy for breast cancer include

Soreness or redness of the skin
Tiredness
Lymphoedema
Slightly darker skin
Rarely, you can become short of breath due to radiation fibrosis in your lungs. Or perhaps have rib fractures in the future because of damage to your ribs.

There is more information about the side effects of radiotherapy for breast cancer on CancerHelp UK.

There is more information about this trial on the Supremo trial website.
http://www.supremo-trial.com/

Location of trial (edit note: see actual trial)

Contact details
The Information Nurses
Cancer Research UK
P.O. Box 123
61, Lincoln's Inn Fields
London
WC2A 3PX
Tel: 020 7061 8355
Email: cancer.info@cancer.org.uk

Chief Investigator
Dr Ian Kunkler

Supported by
Breast International Group (BIG)
European Organisation for Research and Treatment of Cancer (EORTC)
Medical Research Council (MRC)

http://www.cancerhelp.org.uk/trials/trials/trial.asp?freetextsearch

 =&searchtype=select&trial=10657&trialno=8317&spage=1&objective

 =0&cancer=68&stage=0&phase=0&treatment=16&location=0

(Please copy and paste all together as one line, or pm me for trying again).

In sum: it appears if you're willing, it is offered in your town. I might suggest turning to your copy of your original pathology report for the size of your tumor, which I thought you said is 2 cm.  

I'm wondering too if your tumor may not have been stored for research, and your hospital prefers to enter those whose had. Please see the highlight about your ability to decline this and still participate. 

If your tumor is 2 cm, you may have to go to bat for this Sue. There just might be a general uprising if you qualify but aren't permitted from your friends, but your breast surgeon surely might be your best ally along with yourself on this.

I wish you much luck and write back if I can help you in any way. 

You've been so strong through this journey: once again, the patient has to gather herself up, rise strong and speak out mightily.

Tender

TenderIsOurMight

Sue,

In case you're looking here's what you recalled:

sueps United Kingdom User since: 11 Sep 2007 1560 Comments

24 Oct 2007 09:21 AM Edited 24 Oct 2007 12:11 PM by sueps Hello Everyone xx Hi Poppy, I was thinking about you...hope everything is ok x Well I am back....what a morning...I met with the surgeon....she took my dressing off...and all is healing well...I wouldnt say I was upset but just looks a little different...my the scar is long! So they are not too forthcoming with information, and I did as much probing as I could...basically... the cancer is grade 3 .....the staging is borderline 1 to 2 as the tumour was 2cm..they took all my lymph nodes all of only 14 I had LOL.....they were all clear!

So there you go.

Tender 

Anonymous

Good to see you Tender...thanks for your work!

Judie 

livesstrong

Tender - Awesome work - you are the best!!!

Well I had my follow up with the bs for the biopsy - of course everythig is fine (in her eyes) have to go back for a mammo in 6 months.

UB is feeling better - he'll have to start drinking the contrast tonight for tomorrows CAT scan.

Sheila - how fabulous to have your pic on a calender!! Let us know when there out so I can buy one!!!

Sue - sorry I don't know much about Mast's & rad's but Tender's article looks promising. 

bbl, 

AE 

livesstrong

Sue - I started playing scabble again - sorry for the lapse!!

AE 

sueps

Tender xxx

I am so ETERNALLY grateful for the work you put into me ...it brings me great faith and tears !!!  Nice tears xxx  Your suppport to me in my journey has been so needed and welcomed by my family and I .

Well I have a day off off tomorrow and so I am calling up my breast cancer nurse "I don't want to be in Claudias' club"  and I am going to ask her to get in touch with my surgeon Dr Winstanley who would mostly be horrified from what my ONKY Mr Weksh is suggesting.

Mr Welsh even told me they wouldn't be happy if he offered me to opt out AND asked my opinion on this trial .

Og I just don't understand...and the worst thing to deal with is this little side in all of us that would be over joyed at not having to go through with it and this I have to fight to ... but it helps to look at how I would cop long term ...AND i HAVE NOT BEEN THROUGH BOOTFACE OPERATION LOSS AND CHEMO JUST NOT TO HAVE THEN END TREATMENT!!!!!!!  ARGGGGH..

Thankyou beautiful sisters and once again I apolpogise for my abscense xxx

The fatigue is actually now driving me to despair and dark thoughts it is the worst s/e ...I got in from work 7 hours ago and did 2 hours in the garden ...and have been ASLEEP since...I am still in my friggin freakin uniform I put on 12 hours ago ...I HATE THIS!!

AE lol...shufty is slang to look around....mooch around ... I say to the boys when we are shopping "I am just going to shufty over here I wont be a min"   hahah ha funny eh LOL

Anyway it is now 11pm I have just run a bath no doublt I will be up all night with steroids ...

Ohh and I was still really low yday AND the Onkys parnter says "Well

SUE if you dont have treatment today we will have to call the whole lot off!!!"  OMG my heart stoppeth right there!!

Much Love xxxx

sueps

http://www.youtube.com/watch?v=iaiW-DEy7y8&feature=related

If I am ever really down I watch a clip of Peter Kay he makes me laugh so much .... he is from Bolton .... xxx

Well I am wide awake and it has gone midnight ....ho hum LOL

I love you all xxx

Wren

Hey Sue!

I'm sorry you aren't sleeping but you are kicking bootface's butt!

You work harder than anyone I know who is undergoing chemo--and I know you will continue to pull yourself up and those around you. Your spirit it so strong! I'm inspired by your strength!

Hugs to you! Rest when you are able.

TenderIsOurMight

Sue,



I'm sorry your oncologist's partner was so cavalier to you with her attitude. Gosh, with all cancer patients go through, an attitude is just beneath physicians, nurses and staff.



I think it's great all these months that you've spoken up for yourself when you thought it best. Thankfully as this site shows, we breast cancer patients can communicate with one another about treatments , etc. In a way this adds another level to quality control of treatments, as patients who choose to be are more informed. I'm very thankful for Breastcancer.org.



When you speak with your breast surgeon (perhaps he will speak with your primary oncologist) it's important to ask, imo, if he recommends radiation period, perhaps because of that deep margin, grade three , etc. In other words, does he advise it outside of a trial?



This is important knowledge I believe, and important communication between the doctors, because in the SUPREMO trial, you stand a 50% of getting and 50% chance of not getting post-mastectomy radiation therapy.



So, if your primary oncologist and your primary surgeon feel the radiation is necessary it would be better not to go into trial unless you are uncertain and wish to go into randomization. If they recommend it, then they arrange for it to be done.



I hope this helps clarify the issue some. It's an honor, btw, to help my sisters through this journey in what small way I may.



Hoping you rest well tonight,

Tender