Shadow in chest is recurrence
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It's morning in California and the weather here is lovely. Thank you again all for the lovely welcome, and I thank you all for the support.
The biopsy went smoothly, and the results came yesterday. Malignant. On Monday I will find out the type/grade of the tumor, but my doc is fairly sure it's triple negative again. It's not even 1.5 years post treatment, and the tumor is already 5 cm, enmeshed in bone/muscle/rib. Doc sounded very concerned. I sat in my car yesterday after work, weeping. It doesn't look good, and triple negative is the WORST.
She did say I could get a second line chemo treatment to try to shrink it, then operate....but I feel like at this point it's going to be whack a mole with tumors until I eventually croak.
My daughter is away on a week-long field trip with her school thank God, but she's returning next week and my husband and I have to tell her. We've talked to the onc social worker and will plan that conversation with her. That, ladies, is what makes my heart ache the hardest. Looking my daughter in the eyes, and telling her it's back.
I'm 50, have a job and family I love. I'm still in grief and shock - I took the day off work today to rest and regroup emotionally. Just crying off and on and today, and letting myself have that time.
Thank you for being here.
XO
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Jojobird,
I am so sorry to hear this. There are simply no words. This disease is just so unfair. I know how gut wrenching it is right now, particularly knowing how it will impact your family. Please know that I am thinking about you, wishing I could be there to lend support.
I know you have likely heard it before but it does get better once you have a plan. And please don't give up hope. There are ladies on this site who have continued to do well (including some who are triple negative) and treatments are improving all the time. As you pointed out in your first post on this thread, you don't have any major organs involved and so, your oncologist's plan for shrinking the tumor and then following up with surgery may be a wise one. Take some time to consider your options and don't hesitate to seek out advice here. There are some very knowledgeable folks on this site who I am sure will chime in.
While we are all unique in our experience, I do understand what you are going through to some extent. I'm in my mid 50's with a busy career and responsibilities at home. I won't deny that the last year has been tough (I had malignant pleural effusion which then led to a lung infection and then significant progression) but now, I'm feeling great and have continued to work full time throughout. And as you know, planning for a big trip abroad. I have faith that there will be a treatment for you that can push it back.
Be kind to yourself and take all the time you need. Let us know how we can help.
Sending you virtual hug from Canada. Pat
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Di. Let us know what the oncologist says. Holding my breath for you...
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JoJoBird I'm so sorry. I don't know what to say. Know that we are here for you. The good thing about chemo first is you can see how well the tumor is responding to chemo.
Saw oncologist. Breast cancer is back in my lung. Get pet scan 25th and see my radiologist 26th. Oncologist is waiting for my thoracic surgeon to get back to him to see if surgery is an option. I had part of my left lung removed during amputation so not sure if it's an option. I will get high beam radiation for a week then 3 weeks later chemo. I don't even know what to think anymore.
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Oh Di. I'm so sorry. I know this is a blow after everything you have been through. I don't know what else to say.... I hate this disease....
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Pat thank you. This shit never stops. I did everything I was supposed to do and still get kicked in the ass. Sorry my ugly side is coming out.
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Di big hugs!!!!! I am really sorry to hear about your latest news!!! This disease sucks big time!!! We are hear for you if you need to vent.
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No... it doesn't stop but neither do we. Hang in there Di. We're here for you anytime you need us. Pat
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My 3 days of nausea stopped and life is so good again~~I was afraid to believe it this morning when I woke up. My son who is here on a 5 day break between 3rd year nursing exams says it is credit to him due to his soothing and caring ways. I believe it haha but having him see since Monday and my daughter arriving today does make me feel better. Each of them has gone for a long slow walk with me too and as Pat can tell you spring may be here.
Now I want to try to support you Diane and Jojobird. Both of you have been hit hard this week and it IS hard for us to know what to say. But we do want to help in any way we can. Jo, I read your news 3 times and what I saw was that your doc suggests it may be possible to use a second line of chemo to shrink it then possibly surgically remove the tumour. I will be hoping this is possible even though it may be a long haul. It does sound as though your husband is with you in this and working on the best way to explain the situation to your daughter. How old is she?
Diane, I know you have a supportive partner and family to to hold you close right now.
Speaking of partners, on a happier note, my husband and older son/girlfriend and DH's mate have almost completed a passage across French Polynesia on our catamaran and next will be a passage to Hawaii and if all goes well, I will join them in Hawaii for a visit in June when they arrive there. He hopes to be home in early July and finally our whole family and boat (our kids basically grew up on it during summers in Turkey when we lived in the Middle East) and we are all excited for this.
Pat, I am so glad for you as your holiday approaches. Liz, how is your energy level this week? Lolis nice to see you and please let us know how you are there than no doubt wishing for the end to this winter.
Love and hugs to you all~~Lalady how are you?
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Di - the beach picture - it about 50km north of Byron Bay, at a place called Kingscliff
If you are wondering where is everybody - I drove them ALL away 🙄
Di - you did more than everything you could - there is no rime or reason to this fucked up disease. I am gutted this happened to you. I am back at work and on line - we are ALL here and not one of us does faint hearted so you want to let rip - go for it - this is your place!!
Ioana
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Jojobird,
At this point,I can not add much to want everyone has said.
I am so sorry you are having to deal with this again.
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Good morning,
Heartfelt thanks for the kind words to everyone.
DIV, I'm so sorry you are dealing with a recurrence again and can only send empathy to you. I do hope surgery is an option, if it is what you and the doctor decide is best. It sure is a shit show, and I'm sitting next to you with popcorn.
Marianelizabeth, the doctor indeed suggested that it may be possible to shrink the tumor and surgically remove it. We're meeting with her Monday for the full layout of options and plans, and my husband is sad, but this time he's angry, too. He's angry at cancer and the world. But incredibly supportive, and cooking meals and being very kind this week. My daughter is in 8th grade. It's been extremely difficult to keep up my emotional control around her this past week. Husband and I were clear that we did not want to tell her until we knew the full scope, and we are working with the onc social worker (meeting Monday) to plan the conversation and set up supports. Also, I really hope you get to go to Hawaii -- that sounds so exciting.
Pat, thank you for your words of support and inspiration. It sounds like you have managed through a difficult year with strength, and I am rooting for you on your big trip. Please keep us posted on your adventures!
Ioana, that beach photo looks lovely. It's a great place to let it rip, and get peaceful too. Ebb and flow, ebb and flow.
Now to face the day. Coffee helps. Love out to you all.
Jojobird
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Hi all,
Want to chime in with my love and support for Di and Jojobird. Words fail me right now but we are here and there are plans afoot for the next fight. Just so sorry there has to be a next fight. Crappy, shitty disease.
I am enjoying a rare sunny day. A beer in my back garden and in my mind you are all here with me, enjoying a cool one!
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loana thank you for the pic it's very beautiful!
Thank you everyone for the well wishes, hugs and positive words of support. I'm still trying to process all this.
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All of you, this is one of my daily go-to places and other than the private Facebook group that came out of our BCO Chemotherapy 2012, it has given me so much joy along with sadness to follow this small group of amazing women. This is not to say that I will be so happy to welcome others too, but this space is special as we move along.
Ioana, just wanted to let you know I had a long taik Wed. with the nurse at the cancer agency who works with my pain doctor. She was understanding and we went over all the meds I am on and together decided to have me stay on 25 mg of nortriptylene. I will meet with her and m pain doc in a couple of weeks.
I wish you all the best weekend possible despite some waiting game ones. Ioana, I know you are already on Sat. My son leaves this evening and my daughter tomorrow afternoon and it has been a breath of fresh air having their support this week.
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Feeling sad tonight ladies. I just learned that my hair stylist of more than 20 years passed away a few weeks ago of what I believe might have been an embolism. Details are a bit sketchy - His wife is taking it very hard which is understandable given the suddenness - so no obituary.
I knew something was wrong when I called to make an appointment and received a recording made by his employee indicating that regrettably the shop was closed. His tools are still sitting at his station in his shop.
I'm just so broken up about it. He shaved my head when my hair started to fall the first time I had chemo in 2001 and then again last February. It was one of those relationships we have in our lives, not exactly a close friend but still a constant presence in your life and a closeness that is hard to define. He was a kind man and I will miss him.
It’s a stark reminder that life is fragile for all of us, with or without this damn disease. Thinking of all of you my friends and thankful that our paths have crossed regardless of the circumstances.
Hugs. Pat.
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Pat,
Tragic news and another reminder of the fragility of life.
Sending a hug to you and I hope his family are comforted in some way by the high regard he had within your community.
L x
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I am so sorry, Pat, for this sudden loss. So true that life is fragile, and nothing can be taken for granted. All the more sensitive for us who've been given this disease, too.
My husband decided to gift us with a weekend on the coast, and so we're now at a small inn right on the water, having coffee, reading, and watching gulls swoop down on the water.
And how much longer? How many more days? I'm enjoying the view of course, but these stark questions arrive like glass, or a mirror.
Onward. Love out to all.
Jojo
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Pat,
I am sorry. I can feel yoursadness. Uffffff...sigh.
Hugs to all,
😊🌷🐣
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Pat I am so sorry. My heart feels heavy...
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Thanks all.
I completely understand why you mentioned Lita. I also follow Lita's thread. She is quite amazing not only in terms of the grace with which she handles everything thrown at her but also the wicked sense of humour that she maintains throughout. It is a strong message for all of us to squeeze joy out of each day as we just never know. Personally, I have continued to struggle with the cost of my upcoming vacation. I need to let it go and just focus on having a great time.
Beautiful day here today. I’m heading into the garden to make myself tired from fresh air and physical exertion (rather than treatments)!
Hugs to all. Pat.
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Hi Pat,
You got it - I'm happy. I was a bit self conscious as I am Stage 2 and outside physiology stuff etc I absolutely do not profess to get it...any of it on any level. 😊🌷🐣🍷
Lita rocks!
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Enjoy the garden!!!
You will be ok with the cost when you come back!☺️
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Hi Pat,
sorry to hear about the loss of your hair stylist. hugs!!!
I also booked a trip to Nice and it's a bit more expensive that I would usually be comfortable with but given the things that have been thrown at us I am okay with the price tag as it's an opportunity to enjoy our lives to the fullest.
Seems like spring is here and it is so nice to see the sun shining!!!
Hope every one is doing well or as well it can be.
Hugs!!
Lola
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HI everyone,
I want to start by saying that this sounds like an established group and I do not want to intrude this group -- you have all been so welcoming. But I'm in a dark place and could use some support.
Husband and I met with the onc yesterday. Tumor is near the rib and very difficult to operate on right now. She wants to reduce it so that it's operable. So, two choices: taxotere and Xeloda together, or just Xeloda. There's a 30-40% chance of either of those them working, and even if the whole process works, still a very high risk of the cancer coming back.
We're looking at, basically, whack a mole for maybe 2-3 years until I pass, I think. My husband keeps telling me to fight it, and I'll take the chemo I guess, but the side effects look grim and like a really sucky way to spend my summer.
I'm having to think hard about my work, life, situation in general for the next few years. I'll be lucky to see my daughter graduate high school.
I'm just very sad, walking around the house feeling punched, bewildered, out of air.
Jojo
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Jojo,
The others will chime in soon.
How Liz, whose thread this is, managed to put up with me is evidence to her immeasurable grace and courage and not to my capacity to communicate....
I tend to be blunt.
It is normal to feel punched because you have been punched.
You have been handed this huge blow - break down your priorities into pieces and look at those that you can for now.
Let's start with hope - even if tonight you don't feel it exists, let's start with hope.
https://www.mdedge.com/jcso/article/148365/breast-...
https://www.researchgate.net/profile/Jaskirat_Rand...
Tomorrow we talk chemo, immunotherapy, and life.
I hope at least one of the links now opens..
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Jojo,
First, you are not intruding. I know I can speak for all of us in saying we are happy you joined us (although we also wish it was for other reasons).
As Ioana said, there is hope. I know you are in shock and understand how difficult and overwhelming it all seems now. But there are existing treatments that can beat this back and new treatments being discovered all the time. Please don't give up.
As to chemo, I have not been on Taxotere but have been on Xeloda. First, you need to understand that chemo for stage IV is not like adjuvant chemo. In general, the treatments are much kinder as quality of life is a high priority to those treating us. My first treatment post stage IV diagnosis was Taxol which is related to Taxotere. I found it very tolerable with no significant side effects. (I did lose my hair but that has never been something that stressed me out particularly.) I have also been on Xeloda. Again, I had no trouble taking this medication (which is given in pill form - not IV) and continued working full time throughout. There may be some fatigue and, with Xeloda, hand and foot syndrome is common. (This causes the hands and feet to get a bit sore and the skin may crack. However, this can also be managed with lotions and special care.)
So, all this to say that the side effects are not that bad and you can, and will, continue to live a full life on these drugs. There is a wealth of information on this site in terms of various treatments. Take advantage of the tips on offer from ladies (and a few men) who have already been through it or are currently taking it.
So, back to hope. If I am reading your post correctly, you have a single tumor that may be operable once they shrink it. This is good news. When you are up to it, look up oligometastic. This may describe your situation. I think your oncologist's plan is a good one which could put you into remission for quite a while.
Finally, please know that I am thinking about you, sending all the positive thoughts I can to get you through this difficult time. We're here when you need us.
Hugs. Pat
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Jojobird, support is right here and you have come to a good place for it. Know we are here for you. It may be positive news that has your MO saying she wants to shrink it before surgery. I note that you are triple negative so I imagine that she is looking at all options for you given that. Sadness is so much a part of the illness we have and is normal. When does she want yo to start? I did the AC and T you did prior and unfamiliar with taxotere and Xeloda and am hoping some of our buddies here will have some advice.
A close friend whose husband died in Feb. from CJD is taking the ferry from Vancouver this morning and I am still having coffee in bed It takes me a good hour to really get going each day. But having my friend here means so much as she has her first real "away."She is going to start me on the scanning of photos process as I want to do books for each of my kids and my husband.
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Hi Jo Jo and Div - so sorry to read about your progression. JoJo I have been on taxoterrible and xeloda - in my opinion I would chose an IV chemo to reduce the met by your rib. You will lose your hair on taxotere but it is a strong med. Xeloda is a pill and designed more for bone and liver mets. I'm taking it now. IV meds are systemic and go throughout our bloodstream - hence more likely to reach that rib. Just my thoughts. Div - let's see what they want you to do next. Sending hugs and a bit of bubbly cheer to Ioana. Liz I will see you soon for tea!
(()) Claire
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Ohhh Claire - thank you!!!
On call and 3am...just popped a bottle of Ruinart - Blancs de Blancs - in the fridge for tomorrow - will toast you right back. It's a lovely clean drop from an old house, and at about $80 Australian - not too much and not too little. I don't do it very often but your NYC meals have encouraged me to home splurge. And we have Anzac Day tomorrow/today - a day of remembrance for our WWI heroes.
Marian, Given all your trekking I would have loved to help you with the photos - the adventures!!!!
Hugs to all,
Jojo stay close and post as often as you need to - one of us will be around.
Di - you are always in my thoughts.
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