Secondary bone mets

Hi Rosetre

sorry no one has replied. I too have bone mets due to lobular breast cancer. First diagnosed in September 2919 with secondaries then found primary. Mine is travelling in my blood so no lumps.  I am on letrozole, palaclib and denasub injections and so far no further spread my mets are in quite a few different places. Be positive some people can last for years with bone mets. Onc told me there are different treatments to try. Thinking of you ️

Hi all,

I am a 24 year old diagnosed with stage 4 bone cancer (paro osteosarcoma). 

i am soon to undergo chemotherapy this week to treat my bone cancer which is stage 4 and has spread to the lungs. I have been told that bone cancer is chemo resistant so there is a very low chance of the chemo working, around 20%. 
 

there are a lot of risks with me going ahead with the chemo given the situation with covid-19. First one being a compromised immune system which will make me more suceptible to catching the virus which can be fatal. Secondly the damage the chemo will do to my quality of life, as now I am healthy and feeling well and fine. There is also a risk that I could go through the whole chemo process and it damages my quality of life, only for it not to even work. 

However if I don't go ahead with the chemo, then there is a strong chance the cancer will grow and spread further. My cancer is very aggressive as the tumour which was taken out of my leg was High grade and now small dots are in my lungs.

I was thinking to either go ahead with the chemo now and take the risks. Or wait a few weeks and assess the covid-19 situation to see if it dies down. However the situation is unpredictable and 4 weeks could turn to 3 months. Also worried that I start a cycle of chemo now and the rest gets cancelled due to the heightened growth of the virus. Which would also have been all for nothing.

Any advice would be helpful as my treatment is due to start this week and tomorrow I’m getting my PICC line in. If anyone could help, I would be really greatful. Thank you. 

Hi sparkle95.

Sorry to hear you have been diagnosed with bone cancer.  I have grade 4 secondary breast cancer.  Basically my breast cancer has now metastasised and has gone to my bones, namely my spine, rib and a tiny bit into my lung.  

This is my third time with cancer.  In 2015, breast cancer - treatment lumpectomy, Chemo and radiotherapy; then in 2017 I had right side mastectomy and reconstruction; then last July (2019) I got a rsistent pain in my back and was diagnosed with this grade 4.  I felt like my world had been blown apart.  I got married in August and then chemo started in November.  I am lucky that chemo isn’t affecting me too much. I’m bald of course and no eyebrows or eyelashes which being female is a big deal but hey I knew what would happen.

i would tell you to try everything they offer to beat this.  You are fit and young and new treatments are coming through all the time.  It’s terrible to be told that you’re a grade 4 because all you can see is that you have been told there’s no cure.  But there are treatments. So many of them giving many many people a prolonged life.  There are so many stories of people living with it for 20 years or more and that will only improve the more they test and bring out new treatments.  It’s taken me 6 months or so to stop screaming how unfair it is.  But people around me have been so positive and keep me on my toes.  Treatment can still mean a long life, with meds and bald head and steroid face, but keep positive thoughts, it really does help.  I know what I want to say but I’m rattling on, if you want to talk pm me.  It helps if someone knows what you are going through x

Hi violetrose,

im so sorry to hear about your experience, it sounds tough and you are an absolute soldier! times like these are so difficult for people like us because our lives are at such huge risk either way. I am leaning more towards doing the chemotherapy simply because i dont want to have any regrets.

however, i am also taking some alternative  natural meds. Part of me is thinking to try these out for a month, get a scan done and see if they are working or not. If they are then continue, but if they arent then start the chemo. The only issue is, delaying chemo for a month could cause the cancer to grow more, but also who is to say they will still be continuing with treatment in a months time? the virus situation could get worse.

i am facing many dilemmas here, it really is a tough one and i need to decide asap :(

Hi

I am on same treatment plan as you and I’ve had a very similar diagnosis in a very similar way with the nibble being pulled in and my mammogram being clear and with doctors thinking it was everything else and not listening. 
I hope you are doing well. I’m on my 6th round of palbo.

Hi everyone else too! Please try to stay positive! I know covid 19 is scary and I was asked if I wanted to delay treatment because of it and to not come up to hospital for treatment- I said no, I wanted treatment because if I delayed it now, and the virus got worse then treatment could be delayed for longer so I’m just being really careful and staying In apart from trying to get out for a walk a day. This cycle is now almost done and I’m coming up to my 7 day break. Had a scan last week so I get my results next week to see where I’m at.

We are all here for each other! Stay positive. I read the positive story thread in the breast cancer group and that really helps. 

Hi,

noswad1 added the following Positive story link to other areas on this site-sharing the link:

https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer/f/breast-secondary-cancer-forum/186433/positive-secondary-breast-cancer-stories

Hi jo6

im doing fine at the moment. Just had my week off treatment. Going for bloods on Friday with the aim to restart on Monday. I have joined a couple of support groups on social media and there are a few scary stories of people’s treatment postponed until after the virus has gone. It’s so scary especially after been misdiagnosed for 3 years. 
The situation in my area is very serious at the moment. My place of work is been turned into a makeshift hospital/morgue.  Obviously we are closed and staff ferloud. I’ve been there for 35 years. I am usually positive but been upset since been told this. I have told my daughter that if I contact the virus to not let me go there to die as my staff would not be able to cope. Sorry to be morbid. 
How are you coping with your treatment my hot flushes and night sweats are horrendous but will put up with them if the cancer slows down. I am due another scan soon but think this will be put on hold. Are you in a lot of pain? My day to day pain has lessened quite a bit since diagnosis which is really strange I can’t bend or walk far as I start to stoop and get a bit of pain. 
sorry for the long post. 

Joanne

Hi Razzy 

Omg- it really is getting very serious with this virus and I don’t think people are taking it seriously enough! 35 years is a long time to work somewhere and then to see it all change!

Yeah my hot flushes and night sweats are pretty bad too! I actually can’t tell whether I’m hot or cold anymore! I’m normally cold after a hot flush! I have been using chill gel pillows which are my life saver! You can put them in the fridge for extra coolness but I find mine work just fine out of the fridge. I bought two from amazon- one for my head and one I can put on my chest or legs! They are blue and rectangular! They are great!

I'm doing ok-just about- I had my scan last week so should get results next week- I always become really anxious on my week off treatment as that’s when my injections, bloods and appointments always are. It’s like reliving everything all over again each month and I hate it! I’m also anxious about being out 3 days for different appointments that I’ve no choice but to go to! Going to mask up and take every precaution!

My pelvis, hips and spine are sore- painkillers are helping but they don’t take the pain away completely- I find the pain eases when Im more active to a point- like going for a walk! I’m just so scared the big C has spread but I’m hoping that it hasn’t as like us all, I really want the treatment to work! I find a hot water bottle helps ease and relax my back and lower parts when I’m most sore!

Take care and stay safe! X

Hi Jo6

i have a gel pillow and have had it for years because I was always a hot person. I get really cold after a flush.

i went for my bloods today I wore a face mask and gloves. I was better protected than the nurse at GP surgery.  they phoned me from cancer unit at the hospital and said my treatment going ahead. I had a little cry in the car coming back home as I had  to pass the army trucks outside my place if work.
I then came home to bad news.  

As I write this I am waiting for a phone call my sister has COPD and is now in hospital with the virus. She is not expected to last long. I’m so upset she asked for me but under the circumstances Icant to see her. They have let her grown up children sit with her. I FaceTimed her this afternoon and she looks awful and is struggling to breathe.  Her heart is strong but obviously her lungs aren’t they have not put her on a ventilator.

my sister had not been out of her house for weeks so unsure where she contacted it from. 
sorry to lay this on you x

Hi Razzy

I am glad your treatment is going ahead. I too will wear mask and gloves for appointments.

Oh no... I am so so sorry to hear this about your sister. I really hope she improves. Will keep her in my thoughts and prayers. Xx I hope you are doing ok in a very difficult situation with not being able to visit her. That’s very tough! Do not dare apologise. This forum is here for people to talk to each other! I hope things have improved! Xx Here if you need to talk to someone!