De Novo Metastatic with new progression - first post

Bris1976

Hi there,
I am completely new to the discussion boards (first post) and trying to stay positive. I was wanting to reach out to others who might understand what I am going through.  I was diagnosed de novo metastatic on 04/07/2018.  Originally it was a single spot to my spine (L2) then a few weeks ago I found out there were some new spots (T12 and right sternum) and then yesterday I found out it is now also in a lot of other vertebrae, left hip and that one of my vertebrae has partially collapsed.  I am on the ribociclib/letrozole combination as well as receiving monthly injections of Zoladex and Denosumab and am taking Vitamin D and calcium supplements.  Unfortunately my regular oncologist was away yesterday with a really lovely trainee oncologist taking my appointment.  He was very patient with me but wanted to wait until I can see my regular oncologist in two weeks time where she will discuss what happens next with treatment.  He told me it was very unusual but it didn't seem the ribociclib/letrozole combination was working for me anymore but there were other treatment options available.  Back in the beginning, I did get a pathological fracture to my spine (L2) which was treated after a month or so with stereotactic radiotherapy which I thought had controlled the tumour.  I started experiencing pain in my lower back again and was referred to do an MRI which shows multiple new metastases.  I am really worried about getting another fracture as the last fracture I had was so painful and debilitating.  I really hate having cancer but I REALLY hated losing my mobility.  I am 42 years old and live alone.  I am currently taking extremely good care of my health (nutrition, daily low impact exercise and rest) but don't know what else to do.  Is there anyone out there who might be able to give me hope or advice about ANYTHING I can do for myself to help my situation?  The hardest part about this situation is I feel like I am not in control of this situation at all.  I am so independent and it is hard for me to ask for help. 

AllyJay

Hi there @Bris1976...I'm so sorry to hear of your devestating situation. I'm not in the same situation as you regarding my cancer, but I do have terrible joints...basically all my joints are damaged by a different medical condition. I also have bad back pain and all I can offer is this. Whatever the cause of bone and joint pain, you have to take care of them. I have a number of those little croissant shaped travel pillows filled with tiny polystyrene beads. I use these between knees when sleeping on my side (on my back or front is impossible for me. By doing so, you are lifting the upper leg joint at the spine to be straight. Otherwise the upper knee is at a downward slope and this alone leaves me in agony. Invest in the best mattress and or topper you can afford. I have been forced to use one of those four wheeled granny walkers, which is quite humbling, but it gives me a measure of independence when out and about. I hope your team get another good plan for you, and that the revised regime will get this all under some sort of control. Sending you a big Nanna Hug. ((( ))). Ally.

Bris1976

Hi Ally,
Thanks so much for your helpful advice and kindness.  The pillow idea is something I hadn't thought of so thank you.  I am back to wearing a back brace when out for my daily walks which seems to "hold everything together" to minimise friction.  I do have a "claw" to pick things up (the thing that rubbish collectors use) but haven't had to use it since my original fracture healed.  I also have a walking stick (!) but again haven't had to use it.  I am finding it a bit hard at the moment as I am fit and healthy and prior to this diagnosis had no medical issues or even much contact with the medical system.  Saying that, it has been 8 months since the initial diagnosis so I've had a bit of time to process things.  I am just taking each day as it comes (which is hard for me as I am a planner by nature) and understanding that some things are just not in my control.  It really helps to know that I am not alone. 

AllyJay

Physios also suggested a walking stick for me, so I had one on loan for a fortnight. I found it useless, as it was yet another thing to carry and more importantly, had me slightly leaning to one side. I took it back, bit the bullet, ate a big slice of humble pie and bought Sam (my walker). He's very useful for putting packets under the seat, keeps me straight and upright, and also serves as Granny's Pram for my grandson, who climbs up onto the seat and imperiously gives left, right and stop instructions to his devoted slave. I also find it useful as a warning to oncoming pedestrians to watch out, as I've almost been ten pin bowled over by idiots mesmerised by their phones whilst they walk. I do understand that you're younger than me, but for me, I reckon whatever it takes for my (reduced) independence is very important for me. If I have a fall, I'm stuffed. Something will break, in fact probably quite a few somethings, and I just can't afford that. Have a good chat with your team and perhaps try something like this on loan from the physio department at your hospital.

Zoffiel

Hi @Bris1976
Welcome. I'm not in your situation either, though I have been on the cancer bus for over a decade.
It's rare to find someone who shares your exact circumstances, but look at this as a hive brain where lots of little pieces of information and advice come together and if you can take useful thing away it's a win.
One thing you can rely on is our unqualified support, we are all in this together. For what it is worth, the lack of control is a common theme and I guess that is the shittiest thing about cancer, we cant get a handle on it. It sounds like you are doing everything you can, keep plodding. Mxx

iserbrown

@Bris1976
Sorry to read that you are de novo mets
Have you joined the private group
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
all posts in that group are in a private setting whereas this main forum is a public forum

Take care

Bris1976

Thanks for the words of encouragement and support.  I really appreciate you taking the time and I will look in to joining the private group.  

kmakm

It is very common that one of the first things we struggle with, whatever our diagnosis, is a lack of control.

The very first thing I struggled with was asking for help. I remember saying in my first appointment with my breast surgeon and breast care nurse that I didn't want to tell anybody. They looked appalled (in a restrained way!) and said they strongly advised me not to do that because I was going to need help. They. Were. Right.

It was very difficult for me but it was the first thing I accepted about my diagnosis. I opened myself up to accept help. It was very difficult at first, and I'm still working on it, but it gets easier.

People want to help. Your friends want to help you. Try to let them! I never felt so loved, and it has deepened the friendships. Being vulnerable is challenging but surprisingly it has its rewards. Big hug, K xox

Jackie50

@Bris1976 sending all my positive thoughts to you. You are doing amazing & never forget that. My Mets are brain & liver...diagnosed 3mths ago, a little different to you.  But may I ask how long you were on the ribociclib/letrozol combo. I've been on them for a week. Hope you find the next step in your treatment & things go well for you. 

Bris1976

@Jackie50, thanks for your positive thoughts and encouraging words.  I had to go back over my notes to find the date but I started the ribociclib/letrozole combination on 06/09/2018 and will finish my last course this week.  I had a bit of nausea and fatigue the first month but nothing after that.  My white blood cell counts have been a bit down and my hair is now very thin but that is a small price to pay.  I'm not sure when they stopped working because the latest scans I've had are the only scans I've had since my initial diagnosis.  Perhaps my situation could be much worse without the drugs?  I do know how fortunate I have been to access these drugs as they only became available on the PBS on 01/07/2018 with certain eligibility requirements.  I have read a lot of the research articles which indicate very encouraging results.  As I keep hearing though, what works for one person may not work for another as everybody is different.  Good luck and I hope you have good results from your treatment.