I just wanted you to know that I'm thinking of you and praying for a good scan.  I totally understand the anxiety you are going through right now, but at least you'll get your results right away.  I have my fingers crossed that you'll get fantastic news and hopefully they'll find "no cats", lol.  Your daughter sounds precious and able to find the joy in life.  I think sometimes we need to find some humor in all of this.

Hugs,

Donna

 

Ann

I'm praying for you to have a good scan, successful surgery, and NED for a long, long time to come.

Charlene

Love and Peace, 

Sue

 

Linda

Fingers, toes and everything else is crossed for you!! and I think I'll throw in a couple of "meows" in just for good measure!!!!

Keeping you in my thoughts,

Allison

How did this scan go?  Did you meet with your surgeon?  I hope the news was good.

Donna

Thanks for your kind wishes and prayers.  CT scan was pretty good (tumor is stable but still 2 cm) and no other mets showing up outside of the subclavicular lymph nodes, so we will proceed to surgery!  Last gem/carbo treatment was yesterday and surgery on Feb 20.  Both implants are coming out and I really don't mind because they are uncomfortable and don't look that great anyway. 

So now we are just hoping for good results from the pathology report in late February/early March - praying for clean margins.  The plan is to do more radiation tx post-surgery and maybe even brachytherapy starting 4-5 days after surgery - a radioactive wire inserted directly to the surgery site.

Hugs to all,

Beth

At least it's operable now and I can get all the axillary and subclav. LN removed which should really help prevent another recurrence in my particular case.  So I'm happy and greatly relieved for now.

Beth

So glad you are going to have surgery soon. Praying for the best,NED is on it's way!!!!

I am so happy that you are going to be able to have the surgery.  It sounds like you are in very good hands with your team.  Wishing you a rapid recovery!

 

Meow!!!

I  am so happy with your news. It seems to be offering you such a big chance for NED. During my mastectomy, I had some deeper chest muscle/tissue removed. I did not have reconstruction/ implants. I don't regret it. It was a good choice for me because my measurements have changed: forst due to the swelling and then secondly because I built up what muscle was still there by exercising. I still have a dent in my chest but let me pass on something about our new physique.

"Women, forever, have done ridiculous tings to their bodies in the name of fashion. Just the other day I read where women are having their toes clipped in order to fit into "classy' "high end ". Not sure what this really does -afterall how classy does your "end" get and exactly how high? The thing we forget about is the story of women who fight hard, learn lessons most of us don't have to and still think life is fun. Its time to recognize that the fashion of the day is honor and courage. And what is more honorable and courageous than going thru something difficult to ease the life of a child?

You are a courageous and honorable human being, Beth, and I wish for you the very best. I wish also that your daughter has someone who can tell her just how courageous and fashionable her Mom is.

Love ya, Kate

I hope you are all doing ok and your cancer is staying under control.  Your posts  have meant so much to me! After all the sad news of our dear TNBC sisters Kim and Caryn and Barbi and Jloon (Jackie) of the past few weeks I needed to read something uplifting so I read your notes above again.

My surgery is in just a few days (postponed to 2/22 due to surgeon's schedule).  I am actually looking forward to it because I so desperately want this tumor cut out of my body.  I have been living with it since early August and I HATE IT.  It's not me - it's a mutated form of me and I want it gone.

The deaths of our dear sisters makes my heart ache for their motherless children. But I am also reminded of just how fortunate I am that my disease is still operable and I still have a fighting chance.  And the courageous fights that Kim and Caryn and Barbi and Jacki waged are an inspiration - I can make it through this surgery, and then through the brachytherapy and then through another 6-7 weeks of radiation and maybe by early May I will be NED and regaining my strenghth.  

I am blessed that both of my sets of parents and my youngest sister (a nurse) are coming to town to support me and my husband and girls for the surgery.  All the love and prayers that everyone sends really do help, don't they?

Love to all,

Beth

It's good to see your post.  I'll be praying for your full and fast recovery from surgery and from this disease.  How wonderful that you have your family for support during this time.

Charlene

Beth,

I'm thinking only positive thoughts for you as you approach surgery.  Dr. M is a gifted surgeon.  It will be so helpful having the parents, sister, your husband and girls around to help you recover.

Hugs,

Donna

 

Sending you love and hugs, and best wishes that this will all be over soon for you and onto a speedy uneventful recovery.  We'll be there with you, hang in there!

 

Hugs,

Linda

Kate

some how, with apologies, I believe I missed this entire thread. 

Just would like you to know that you are in my prayers,

Steve

Beth,

Please post and give us an update on your surgery and how you're doing.  Thinking of you dear friend.

Hugs,

Donna

 

Linda

Beth sent me a message that she was doing great.  Hopefully she'll feel up to it soon to post in more detail.  We love you Beth and sending healing thoughts and hugs your way.

Donna

I must have missed this thread too?! So glad you had your surgery and hopefully it went GREAT!

Thanks for updating us via Donna! Keep the faith and know we are praying for you too! Family is awesome as are our sisters & bro's here on the site!

We are supporting you as well, take care.

Helen in NS

All your messages of support mean so much to me!  It has now been 10 days since my surgery and I am doing great.  The pathology report showed satisfactory margins (fabulous news) and I will learn more  on Tues when I see my surgeon.  I just completed the final brachytherapy treatment this afternoon (2x per day for 4 days in a row) and had the 5 brachytherapy cannulas removed from my upper chest so that is a relief.  My brachytherapy treament team at the Siteman Cancer Center here in St. Louis was amazing, and except for the discomfort of the cannulas implanted in my chest, brachytherapy was a breeze.

On Tuesday I will have the drain tubes from surgery removed and then I will be ready for action again.  Can't wait to start exercising more!  I will be off work for the entire month of March to really focus on my recovery. 

Love and strength to all,

Beth

Keep going girl you can do this.  Remember it is just blip in the road to total wellness....

 

Thanks for the update and take it easy this month....There is lots of time for exercise....

Hugs, Helen in NS

So happy to read your post and to know that you are doing well.  My prayers for you continue.

Charlene

Beth,

How are you doing friend?  I hope you are relaxing and getting plenty of rest as you recover.

Hugs,

Donna

I have finished 15 rounds of whole brain radiation for the three tumors in my brain. They are in three seperate ares. On in the left temporal lobe, one in the parietal/occipital junction and one in the cerebellum. Over the course of the next month they wil shrink. They have me on very high doses of dexamethasone to keep the swelling down around the tumors. It is causing steroid core and trunk myopathy and some spasticity. The tumor in the cerebellum has caused some damage, so my gait is off and I have right side weakness. I now walk with a cane and still sometimes I have stumbled and fallen.We are in the process of having a deck with a ramp put on the front of the house as steps are just awful. I have collapsed three times trying to get in our house. 

but, the positive side is: we've always wanted a front porch so we are looking at this as another surprise gift.

My kids are all grown ups and have been very good about helping out. Over- night I kind of went from independent to having to have someone with me 24/7 and so we have had to also start using some home care

I believe in the power of live music to help reorder the brain and reduce stress. I myself used to sit and play my harp for patients and also at a local nursing home. I used to also play in the special ed classrooms of our public school. I actually had totally non=communicative autistic children speak their first words while touching my harp as I was playing, so I am taking my own medicine and working with a music therapist every week.. My therapist has offered to record my music so I can leave a legacy CD for my family and friends. I am so delighted and so WOWED!!!!! because he has decided my music is worthy of the University of Michigan School of Music's professional Studio! Again, how can I not feel appreciative of the opportunity that is mine as a result of my tumors? I know its not how everyone thinks but this journey has been so full of wonderful experiences, I just can't seem to see this as a blessing.

I have always been a very spiritual person and have sought out the understanding of God - and now I have a tumor that brings a heightened sense of the mystic and spiritual. How do you explain that? There have just been so many of those types of things, I am much at peace.

I hope you all are finding peace with this journey. I do not discount that it is difficult but look at us. WE are all finding out how strong we are. How adaptable we are. How inquisitive we are. How beautiful we are. For whatever it is that our cancer has taken away, we seem to have gained and are so much more than we ever were before.

God bless you , my friends. BE at peace. I am. Kate

what an absolutely beautiful post. Thank you for sharing your thoughts.

I worked very closely with a woman, who only posted on this board I think twice so no one really ‘knew’ her. Unfortunately her TNBC was chemo resistant and all the treatment failed her. She made a decision to keep fighting and resisted ‘home hospice’ until two days before she passed. The home hospice folks brought in music therapists who came with a guitar, a ukelele, a harmonica and one other instrument I fogret. My friend loved music and played the guitar and sang and also was in her church choir for many years.

Her best friend told me that after the music therapist left after a 2.5 hour session in which my friend sang the whole time...Incredible because she had lung and brain mets, but the music transported her, I feel...she said “I wish I had listened to Steve before..this was the best time I have had in the last two years.” Of course, that is an over-simplification of what I suggested to her and she was not a candidate for home hospice when I first met her but her statement speaks volumes about how powerful music can be for some. How much it can add to your quality of life and how it can be a legacy for your family. I think it is beautiful that you are doing your legacy recording and that UM is providing the studio. That’s really wonderful.

Kate, thank you again for sharing. You sound like an extraordinary person and please use your walker. Don’t want to read about a broken hip.

warmly,

Steve

 

Sending you all good thoughts and thank you for your wonderful and beautifully uplifting post, as youself are enduring so very much.  I truly can feel your peace throughout the sentences you wrote.  How wonderful of you to give so many the pleasure of your musical talent.  I don't think there is any instrument more soothing and mind/soul embracing as the harp.  Continued prayers will go out to you for more strength each and every day.  God bless,

 

Linda

Thanks so much for sharing.  I can literally feel positive energy emitting from my computer screen when I ready your radiant words.  

I would love to get a copy of a CD with your harp music!  I play piano (though not well enough to record) and agree that it's very therapeutic to both listen to and play an instrument.  Please keep us posted.  Your beautiful message is a reminder to me to make more of an effort to treasure the gift of music together with my family -my daughter is learning to play piano and I need to get her to play for me more often.

Beth

Donna, Linda, Steve and all,

thank you for sharing with us and prayers that all will be well..

please ask to see a  lymphedema specialist,  who can go over exercises that you should start doing asap.

warmly,

Steve

So good to hear from you and to know that you are doing well!  Getting back to "normal" is a real blessing sometimes, isn't it?  Prayers for your continued good health!

Charlene

Beth,

So good to hear from you and see you posting!  Definitely check out lymphedema therapy since you'll be getting rads tx.  I found the rads to cause problems with my lymphedema.

It sounds like you really enjoying your time off.  I hope it was a truly good healing, both physically and emotionally, experience.  I have a CD from the lady in St. Louis (Amy, I think) that plays harp music.  I can give it to you the next time we see each other.

Donna

 

I am so happy you are "up and running."  Seems that God was assisting your surgeon and I am happy for that!  I hope your radiation is very gentle on you.  You are in my thoughts,

 

Love,

Linda 

Hugs to all,

Beth

I admire your attitude about not freaking out so very much!  You're in my prayers.  Have a wonderful weekend with your family!

Charlene

Beth,

I'll be hoping for the best too!  Love your outlook, stay positive.   

Hugs,

Donna

You have the right attitude! Stay positive and enjoy each moment with your family.  The results will not be any different if we freak out or remain calm so I am glad you choose calm.

Take care and keep us posted. Keeping you in my prayers always,

Helen in NS

Sigh.  The pathology report from the fine needle aspiration biopsy of my enlarged supraclavicular node said it contained breast cancer cells.  Next step is a PET/CT scan tomorrow  - the diagnostic rollercoaster continues.

My med onc is Matt Ellis, who is head of the breast med onc dept at the Siteman Cancer Center at Washington U Med School in St. Louis, and he is a respected clinical researcher and very good.  But I am thinking of going back to Lisa Carey at UNC, who I saw 2 years ago, for second opinion/consultation.  It is so hard to think about the possibility of starting chemo again.  I have already been through 3 full chemo regimens in the past 4 years.

I haven't been doing the full EDGE CAM supplement regimen but I will discuss starting it with Dr Ellis when I see him tomorrow.  Feeling kind of low at present but I'm sure I will rebound soon, especially if PET scan results show no spread outside of lymph node :)

Beth

very sorry to hear the news. hopefully rest of your scan will be clear.

good luck to you,

Steve

I cringe when I open one of these pages and see this. You have been through too much, that being said I hope you do have a scan clear of spread. I can only imagine how hard it is to stay upbeat and positive in the face of fighting YET AGAIN.

Positive thoughts,

Natalie

I am so sorry that you received the news that you did.  I will be hoping and praying that your scan will be clear and that a successful treatment will be found.

Charlene

I'm joining everyone else in sending you positive thoughts. The rollercoaster is just the worst. 

 

I too am one of many that hope this remains localized in the node.  I so hate that you have to go through this troublesome time and await even more test results.  It's so very hard on us emotionally and physically.  I am praying and keeping everything crossed for no new findings.  Keeping you close to my heart,

 

hugs,

Linda

I am so sorry to hear  you are dealing with a reoccurance. Know that all of us on this site are thinking of you. I live near CH and have a son starting school there in the fall. I like you, would consult with Lisa Carey for a reoccurance. She has expertise with TN. Please let me know if you decide to come to CH and need anything.  I will be there a lot in the future and can certainly understand what you are going thru.

Neal

Keeping you in my thoughts and prayers. Hang in there!

Allison

I hope your scan tomorrow brings good news. We will be thinking of you!

Best regards,

Wade

I have been following your posts on this thread.  I am sorry that NED is being so elusive for you.  I will pray that whatever path you take, Lisa Carey or someone else, will lead to better days ahead.

 

You are in my prayers.  You certainly are an inspiration to all of us.

 

God Bless,

Lillie

Your attitude is fantastic and I sincerely wish you the very best of luck in this battle.

warmly,

Steve 

I am so glad to hear the good results of your scan!  I wish you the best with the rest of your radiation treatment and pray for you to get to NED and stay there!

Charlene

Beth,

I love your attitude.  I too hope these rads zap any remaining cells and you can hear those words:  NED.

Hugs,

DOnna

 

You are amazing!  God bless, and, as always, wishing you nothing but the best!

 

Love,

Linda

It is so good to see your latest post! Life is really worth the effort of all we do to get there, for sure.

 

So good you are able to return to work so soon! I think if we can do it, then it is easier to manage these treatments.  I am finally back to full time work but have some tiredness to deal with.  Here's to a complete response to these radiation tx....

Take care,

Hugs from Helen in NS

Beth,

We'll be celebrating with you on June 4th!  

Donna

 

Half way thru!  Yeah!  I too will be eagerly awaiting June 4th for you.

 

Linda

Just thinking about you - so hope you achieved your June 4th goal. Can't wait to see you at our next get together!!! You are a true inspiration!

Allison

 

Thanks for all your good wishes - I did finish up radiation treatment on June 4.   The new supraclavicular LN mass that popped up post-surgery in early April really does seem  to be completely gone - no evidence on CT scan and not palpable.  Yay!  By the end of the 38 rads (that's 7.5 weeks of M-F daily treatments) to my right chest and neck, I had a touch of pneumonia and radiation-induced pneumonitis (inflamed lung) - the symptoms were fatigue, bad cough and intermittant fever.  So I took a course of Zithromax, and then a 1-week course of prednisone and now i am feeling great!

 

Dr Ellis thinks that a low-dose "maintenance" chemotherapy may be a good idea for me now.  The premise is that because of all the recurrences I have had, it's likely there are still some cancer cells floating around in my body somewhere, and a low-dose  general cytoxic chemo agent could perhaps keep this cancer cell population under control (for awhile anyway).  We will be talking about options for what I could take when I see him next week.

 

Does anybody have experience with maintenance chemo for recurrent TNBC when there is no evidence of active disease?

 

Other news:  I got results from the sequencing of a 28-gene tumor panel on my tumor sample at the Siteman Cancer Center/Washington University Med recently.   It showed that I have many mutations in the p53 gene, a well-known tumor suppressor gene.  There are some drugs in development that target this problem of a non-functional p53 protein, so possibly a targeted treatment option for me in the future (if I have another recurrence.)

 

 

Beth

So glad to hear that you are back on your feet and feeling great! Hope that Ellis is able to figure out some low dose magic to keep the lumps away forever! I am celebrating in my heart for you today!

Allison

Beth,

I found this article about Chk1 in p53.

http://www.jci.org/articles/view/58765 - http://www.jci.org/articles/view/58765

Thats why when I read your news I was so overjoyed.

How does one get a genome assay of this supraclavicular node . I am waiting for the new trials in the pipeline and androgen tests and trails are coming around Christmas time at MSKCC.

 

are you strictly vegan?? Do u have any sweets at all. U can tell I am a chocaholic and an ice cream lover!!!!

 

Hugs,

Karen

I am really sorry to hear about the new LN met and the other mets in chest and bone.  How are you feeling?    It does sound like you need to get on some chemotherapy very soon.

In answer to your question, to get the test done which sequenced 28 tumor genes, my doctor at the Siteman Cancer Center/Washington Univ. Med School (WUMS) just put in a requisition for it from WUMS Genomics and Pathology Services.  You obviously have to have a tumor sample (biopsy or surgery material) sent to WUMS.  Doctors from any institution could order this test.  They are having some luck getting insurance companies to pay for this.  I believe that my provider, United Healthcare, paid for it because I haven't seen a bill :-)  

I couldn't make the link below "hot", but you can cut and paste it to see the description of the test.

http://wugps.wustl.edu/services/index.php

As for the diet, I am not vegan and I do eat sweets occasionally, but I really try to limit it because sugar and highly processed non-whole grain carbs are not healthy for anyone (cancer survivor or not!).  I mostly focus on eating lots of fruits and veggies, including berries every day, using lots of different herbs and spices, and having 3 cups of green or white tea on most days.

Hang in there honey!  And try Russell Stover's sugar-free chocolate truffles to satisfy your sweet tooth - I think they are yummy!

Beth

 

Just catching up on reading the posts, and wanted you to know I too am so happy to hear your news.  Stay well, and plan that dinner with Donna - time for you to have a night of fun and friendship! 

 

Hugs,

Linda

Beth,

It sounds like he has a plan for you should you need one and that he's excited about some possible new treatments that will be opening up for TN.  Enjoy the rest of your summer with your family.  Yes, we need to get together and plan that dinner.  Maybe sometime the week of July 9th?

Take care,

Donna

Great news very happy for you enjoy your summer and have a wonderful dinner with donna.

Hugs,

Denise

Congrats on getting your mets under control! No chemo sounds SOOO wonderful. I hope for a cancer free summer (and longer of course) for you. 

Best,

Lisa

You are quite an inspiration to me. I have a 4 cm lymph node supraclavicular, you would think well lets take a slice of this for eval. Genome assay???? I am copying your post to bring with me.  So I will speak with Sloan Kettering chemo specialists on the 12th . Had a few days in Pa and it felt good!

Hugs

Karen

 

no chemo Im happy right now

hello from another Beth. I hope you have a wonderful summer enjoying yourself as much as possible.

Beth