Sarcoma cells

Hi @robeh,

sound like they have been very careful with you mum and that sounds really positive, my wifes Leiomyosarcoma was only diagnosed many months after her hysterectomy. Janice has had two different types of chemotherapy and the last has rendered the cancer stable and we have been in a happy state of living with cancer now for 6 years and just getting on and enjoying life. She only has a check up every 9 months and her oncologist is really pleased.

Try not to look too far into the future as you will almost invariably just make things worse (it took some help for me to learn that lesson). Chemo can be difficult but it is important to remember why they are doing it and the buzz when you hear it is working is just great.

<<hugs>>

Steve

6 years, that is great, here's to many more!

So sorry to hear it's not quite over for your mum yet. Did they find the cells during post op pathology? It does sound as though have been extremely diligent, which is reassuring to know about your Mum's care team.

I'm not too clued up on sarcoma but just wanted to say that my mum had chemo (4 rounds) and radio at the start of the year. It was such a thought at the beginning but I have to say she found it all fairly manageable and the time seems to fly and here we are 1 year after her op (I was just popping on to the forum to post about that). We weren't expecting chemo as she was told at that start that one node looks suspicious and if it was found to contain cancer she would radio. After the op when the biospy confirmed it they offered her option chemo as well, which we werent prepared for (the sickness, hair loss etc). Felt like a bit of a bummer at the time but it is all for the best. Maybe she was lucky but she wasn't overly sick, yes there is hair loss but you will get through all that I promise. My mum is now back to her own hair and misses her wig a bit as it was really lovely (like a smoother, shinier version of her own hair!).

It sucks but you can all do this x

Hello  What a dreadful shock for you all. I’m sorry to hear your news. I know nothing about sarcoma, but I did have 7 rounds of chemo (paclitaxol/carboplatin) after surgery then 25 sessions of external radiotherapy. The list of side effects for chemo is scary but it’s impirtant to remember that not everyone gets every side effect. Also because we are all different we all respond slightly differently and experience the effects to different degrees. I found the going tough but doable. I experienced nausea which was controlled by anti sickness drugs, ginger biscuits and eating light meals.,I was never actually sick, neither did I have disrrhoea. I did lose my hair but I had a good wig which fooled a couple of experienced nurses. I had peripheral neuropathy (burning/tingling/numbness in my feet and hands) plus pains in my joints. As the treatment went on the fatigue hit harder and I had to learn to pace myself. Radiotherapy was tiring with the daily travelling. The side effects were well controlled and whilst I have some lingering side effects form both, they’re liveable with and don’t stop me doing the things I want to do.  Having said all of that there were some very good days during treatment when I could do the things I wanted to do - the initial wedding dress shopping sessions with my daughter were emotional but fun! I was very well supported by the medical staff throughout and they did everything they could to help me through. 

So, tough but doable. The treatment took several months and was hard going at times but looking back now there are lots of good memories from that time too. I’m 21/2yrs on from treatment and so far all my checks have been ok and the good days definitely outnumber the bad ones. You sound like a lovely, supportive son and I’m sure that you can all get through this - I’d just say make sure you look after your own emotional and physical health as well as you are looking after your Mum (I’m saying that as a Mum because I saw how my daughters worried yet coped well because they had fantastic support from their partners) 

Sending you and your Mum lots of good wishes x

Thank you. Yes they found the cells during post op. It's a tough one to take because my mum has been diagnosed with a very unusual form of sarcoma, which is quite aggressive. However the doctors say that no cancer was found in her lymph nodes after the operation so there is no reason to think she actually has cancer in her body at the moment. The danger is there could be a rogue cell lurking somewhere, hence the thorough treatment.

Thank you, fairycake. Helpful as ever. My mother is going to have the same combination of chemo drugs as you, but the course is slightly different. She is scheduled to have three rounds of internal radiotherapy, starting in a a few weeks. So that will be one shot of radio, then a week's break until the next. So that isn't too intensive. The chemo will probably start after Christmas and consist of a three-week cycle in which she has treatment on one day and then a three-week rest. 4-6 in total. 

Hi  one thing about that chemo combination is that the side effects are cyclical - whatever you get in the first round is likely to happen in the second round, at roughly the same time. I found that knowing  that helped me to prepare physically and emotionally to deal with things. The other thing I’d say is if your Mum gets any symptoms of peripheral neuropathy she should tell her doctors straight away so they can monitor things and reduce the dose if necessary. She will  be given the number of the oncall oncologists to ring 24/7 if she has any problems between cycles so she’ll always have access to medical advice if needed. For now just take things a day at a time and try not to second guess things too much x

Thank you again, Fairycake, I shall relay that advice.