Bone cancer

A place for people affected by primary bone cancer (including osteosarcoma, Ewing's sarcoma and chondrosarcoma) to support one another, ask questions, and share their experiences.

Hello everyone!

WillLive75
Posted by

 In 2 weeks' time, I will be having my chemo done! Very worried! I read it has lots of side effects! I don't really know what to do! Take it or leave it! I would appreciate some suggestions. 2 days ago I have been diagnosed with osteosarcoma, already spread to the lungs! I am totally confused! ...Please help!!!  Thank you!

BryonyO
Posted by

Hi WillLive75

You’ve only just been diagnosed so I imagine you’ve a lot going on. 


I don’t know anything about osteosarcoma as a primary but I do know that one woman who had breast cancer had secondaries in her lungs at the time of diagnosis (aged65) and lived for 18years with lung cancer. I don’t think anyone dies of the cancer but instead of what it does to your body, like weakening the lungs so you get pneumonia. So if you can keep the tumours smaller in your lungs you’ve got a better chance of keeping them healthy and working well for longer. 


I'd urge uou to do some research on your cancer, others will share their experiences here and that knowledge is so valuable. Do you know the name of the proposed chemo? Other can then tell you how they found it. 


My partner had FEC-T (which I think is only given for Breast cancer) and it really knocked her off her feet, but the tumours in her spine shrunk and it bought her time. Average life expectancy for her cance is 2.5 years and we’re heafing towards six years and not giving up yet. 


Ultimately it is your body and your decision but make sure it is an informed one, coming in here was a brilliant idea. 


We always look for the best possible outcomes and aim for those. Tackle every symptom and side effect as it comes (don’t put up with it, deal with it is our ethos). 


Good luck with whatever choice you make. In the meantime. Carpe Diem. 



Bryony 

If you look hard enough, there’s something positive in every day.  

WillLive75
Posted by

Thank you for your kind thoughts BryonyO! I did some research and what I found worries me a lot. I only hang in the hope that maybe it's a mistake. I have done all the asked tests until now like MRI's, CT's and biopsy and everything points in this direction. Two days ago I have been seen by a prof. Dr from McMillan Center in London that certified my worst thoughts about this creepy illness! I am very scared of the side effects and I would rather not go this way(chemo and surgery)!!! What troubles me more is that I have a  6 years old beautiful daughter which I will miss a lot! And with this type of cancer, I wont be able to work again, for at least for one year, and will have no means to support myself! One of the medication for the chemo is Cisplatin. I don't remember the other. It is two meds. Thank you for your support and we'll keep in touch! 

BryonyO
Posted by

Hi

I can see why you wanted to pretend that they’d got your diagnosis wrong and it was all a big mistake. Now that you know that it’s true, it still sounds like you think it would be better to avoid having chemo, as if chemo side effects would be worse than cancer.  My partner’s bone cancer is painful, I suspect that eventually all bone cancer hurts and I’m glad she chose the treatments to defer that pain as long as possible. 


If you are that wary of the side effects, then one option is to opt for chemo but ask for s lower dose. It won’t be as effective as taking the full dose but it might help a little to slow the growth of your cancer and you could see how you cope. 


You mentioned about not being able to work if you have the chemo, but I see that you’re not talking about how your illness could progress if you do have it. It’s almost as if you still want to pretend it’s s mistake and it’s not happening. I can understand why you’d feel like that but I want to nudge you towards attacking this challenge head on. 


As for not being able to support yourself. I want to urge you to call the Macmillan help line as soon as you san (number at the bottom of the page ). My understanding is that anyone with secondaries is regarded as falling under the special rules for Incurable cancer (but I’m no expert). This means that there is a short cut to applying for the personal independence payment and this benefit is worth about £120 per week. It is not means tested, which means that anyone who has certain conditions can apply for it regardless of how much they earn or have in the bank. The advice line could confirm if you would be eligible for this and advise you of your rights with respect to employment. They could tell you about statutory sick pay, so you’d know your exact income and if you could also possibly apply for a one off macmillan grant. It would be good to know this information. They also have Medical professionals to whom you could talk if you wanted to discuss your disease. 


Reaching out on here is s fantastic first step in dealing with your problems. Your daughter must be a great incentive to keep yourself as well as you can for as long as you can. 


You can do this! 



Bryony 

If you look hard enough, there’s something positive in every day.  

Dogspire
Posted by

Hi willlive75

Sorry to hear about your diagnosis.  I have late stage endometrial cancer with lung lesions (and plenty !ore besides).  

They tell you about all the possible side effects of chemo and I was totally petrified.  I've now had 3 cycles of carbopllatin and etopiside and can honestly say that the side effects have been minimal touch wood.  The fatigue is cumulative and constipated from session 2 onwards, which only lasts a couple of days.  However, the original tumour in my hip is not paining me at the moment so we are able to get out and about.  You have a lovely young daughter to cherish.


Please feel free to ask me anything (or message me if you prefer). Chemo has been nowhere near as bad as I had feared and the actual sessions have been boring rather than scary.

Love and hugs

Dogspire

Xxx

WillLive75
Posted by

Thank you Dogspire for your compassionate thoughts!

It hurts even more because I do not know what the stage of the cancer is. When I asked the oncologist, he didn't want to tell me.

My medication for the upcoming chemo is Doxorubicin and Cisplatin! Both have destructive and most of them irreversible side effects.I am afraid to become a "vegetable".

You gave me a bit of hope saying you had minimal side effects. And I wish you to be better each day.

God be with us all!

WillLive75
Posted by

Thank you, dear, for your encouraging words and for the tips!

Let me tell you my story! I am a Romanian national who came here 3 years ago to try to find a more decent life than over there. The first year I didn't have any accountable income because I worked here and there, as you can understand with no legal forms. I started legally 2 years back, and that is why I'm saying I don't think I will be eligible for financial support, seeing that my contributions are not enough.

I asked this matter to the McMillan nurse that is responsible for my documents. She was so kind she advised me to try somewhere else, because as she said: "I won't qualify". She might be right, I don't know.

What I know is that I want to bring my daughter and wife here, because they are in Romania.I don't see her, my daughter, in two years now.I will make the arrangements for them to come here. I am afraid I won't see her again. I am a desperate father in a desperate situation.I am trying really hard to face it every day, knowing the inevitable is coming.

I have only my brother here with me who is helping me as much as he can.But he has a family as well, and a son to take care of.

It feels great talking to you BryonyO!

My daughter is my only light! God be with you and us all! Hugs and kisses!

Susanof
Posted by

Hi,

I was diagnosed last year with osteosarcoma in my leg and had a large tumour removed and then did chemotherapy for about 5 months. I was 46 years old and the cancer had not spread in my case. I was also not happy to do chemotherapy but felt like there was no other option as the recurrence rate without it is very high. I did the MAP protocol which may be the same as what they are proposing for you. I had to do it as an in-patient. For me the main side effect was mouth sores and general tiredness. I finished chemo in September and apart from some tingling in my feet, I am doing very well and don't have any other side effects as yet. I hope this helps. 

Do you have a nurse in hospital you can contact to talk to?

BryonyO
Posted by

Hi WillLive75

What a difficult situation you have. To be so far from the support of your wife and missing your daughter so much. This is challenge enough for one person . I have every respect for you that you tried to make a better life for your family by taking the chance on this big move. 


With the awful illness hitting you on top of being away from those particular loved ones, it doesn't surprise me that you are struggling to decide what to do.  


I would suggest calling the Macmillan line for advice on benefits. You’ve paid into the system for two years and from what I’ve read the issue focuses on establishing habitual residence. Perhaps with your wife not here, you can’t establish that but I would speak to an expert, rather than a nurse, so that you know. I believe that ideally your health decisions should be based on what you  think is best for your health rather than financial fears. 


As Dogspire very helpfully pointed out, they didn’t experience the most severe of the side effects. I think it’s unlikely to experience all of the side effects and don’t forget you can opt for a smaller dose to trybit out. 


You mentioned that your consultant won’t answer your questions, which I find disrespectful. We’ve experienced this too. I found that once I went with a written list of questions, they would pay more attention. It might help if you get a notebook and write any questions in English. That way they can read over your shoulder and get an idea of the things you want to ask. They’ll also see how many questions you have. I’ve found that sometimes, they feel the conversation is over and when you start adding questions, they at impatient to get on to the next patient, so they get abrupt. If they can see that you have a list then they can set aside time to answer them. 


 I was told that if you have secondaries in an organ that it is stage 4 cancer but I am not a medic and I maybjot be right. You could get this information by calling Macmillan and asking to speak to a nurse. Help is there to make this situation easier to navigate. 


Having secondaries is very serious. I hope you can get the support you need. At least you have friends here who are hoping for the best for you. 


 

Bryony 

If you look hard enough, there’s something positive in every day.  

WillLive75
Posted by

Thank you again for your kind thoughts, BryonyO! 

On the 7th of March, I will go to do the kidney tests and then I think on the same day I'll have to do heart...and so on.

And on the 12th is possible that I start the chemo. I'll keep you posted anyway! God bless!

bellabongo
Posted by

Hi WillLive 

I'm glad I found you, as I am to start cisplatin/doxorubicin (or Adriamycin) next Wednesday for recurrent womb cancer. A year ago I had carboplatin/ paclitaxol which I did alright, but as it gets nearer to Wednesday I am starting to wonder how I will tolerate these new chemos. I will be able to find out more when I go for my pre assessment next Tuesday. 

I see you start shortly after me, so I will let you know how I get on!

Lots of love and God Bless!

Alison xxx 

WillLive75
Posted by

Hello 

I wish you all the best and I pray that you experience no side effects this time! And then you tell me how it was!

I am not comfortable at all with the chemo, but I think that's the only option left for me!

A big hug and fingers crossed!

WillLive75
Posted by

Hello 

I wish you to get better and better each day and always be that positive and come back spread the hope and joy of life

for those like me, who kinda lost it! I do have a nurse but seems like she's avoiding me or talk to me very briefly. I was wondering if someone can recommend a good adviser, who can listen to you, encourage you and give you a hug sometimes!

Love & Hugs