Diagnoses with a rhabdomyosarcoma going for 1 year of chemo tomorrow really scared

Hi  and a very warm welcome to the online community

I'm afraid I don't know anything about this type of cancer but I noticed that your post had gone unanswered. By replying it will nudge it back to the top of the page where hopefully someone more knowledgeable than me will see it and reply. I'm also tagging my fellow community champion src60 as he normally pops into this group to help with replies.

I realise that you will already have had your first chemotherapy treatment by now and I'm hoping it went well and you're feeling less scared now. Feeling scared is a perfectly normal response to your diagnosis and everyone deals with it differently. Hopefully some others who have your type of cancer will come along shortly to share their experiences with you.

Wishing you all the best for your ongoing treatment

x

Hi, my wife's cancer is a bit different as it is Leiomyosarcoma but basically the same group. We never got a one year of chemo but my wife had two rounds, the first doxyrubicin and the second Gemcatabine.

We found the chemo suite in Oxford really warm and welcoming and met some really great people there going through all stages of treatment - mostly we just talked about the news, television just routine daily conversations to help pass what could be a really boring time sitting there. There is a blog here on suggestions of things to take with you that can be helpful.

I would guess you are going to be scanned at some points to check how well the treatment is working, that is a bit of a worry all the time we refer to it as scanxiety but when you get the news that treatment is working it's so positive - my wife's cancer seems to have been stopped in its tracks by the second treatment but it will never go away so she is monitored but now only every 9 months.

Janice had a couple of temperature spikes during her treatment and with the added worry of a suppresed immune system the hospitals take this very seriously - so admission and intrevenous antibiotics time - I did manage to borrow her back one Mothers Day though to go to a pub lunch we had booked - interesting as she still had her canula in and her hospital id tag!

Is there anyone supporting you in this process - it can be difficult for them too and they might find some help on our pages for carers.

<<hugs>>

Steve

Hi. I really hope you are feeling a little better today. I started chemo 2 weeks ago and I know how you feel!  Like all things in life the unknown is the scariest. Having already spent 4 days in hospital with an infection after chemo I can vouch for how your life feels like it has been taken over. I am waking up every morning feeling grateful for a semi good day. The fist few months after diagnosis I found it harder to focus on other things in my life but this appears to be improving. I'm sure after Thursday morning I'll feel rubbish again. The best tip I've had so far is keep saying yes to things you are asked to go to. If you feel bad it's better to cancel something rather than have nothing to look forward to. Of course make sure everyone is well and it's a small gathering. Best of luck. 

Hi I think u should try to take 1 day at a time otherwise it will get too much to try to answer what if  ? how?you will exhaust your self with worry.there is some lovely advice from people on here so welcome and stay strong.

First thank you for all the kind words and support .i just left the hospital today and feel so bad it was the worst experience of my life and i fear having to go back im just so upset that i have to face this for a whole year i want to give up its not fair everything hurts. I spent 11 hours being sick i have never felt worse. I have prayed and begged for any relief but it does not come. I just want to wake from this nightmare

I feel your anxiety so much, I was at first diagnosed with rhabdomyosarcoma but the specialist think it could be another strand under the sarcoma. Same as you im facing possibly a year of treatment starting chemo next week. Ive been dreading it like you ... trying to stay positive but more worried  of the effects and how to cope with getting on with everyday stuff. I'm 38 and have 2 teenagers who are semi dependent - they need a lot of reminding to do things for themselves and house chores. I have really good relationship with them and concerned how they will cope with the loss of interaction from Mum as the chemo will make me zombie like. I hope you have support and not any of these extra responsibilities. Please keep posting with updates although it may be the last thing after a session.

Hi I’ve just read your message from so long ago and just wondered how you were - my daughter 17 has metastatic Rhabdomyosarcoma and I was looking on here for advice to pass on to her as as you probably know it’s tough at such a young age 

Hi I had forgotten about this post until now . In regards to your daughter I remember how scared I was when I was first diagnosed it's hard to come to terms with and you can feel as if everything is going wrong. In regards to the treatment the first chemo for me was the worst but after that it does get easier . I found that my during my first chemo the anti sickness didn't work so after trying a different one it became a lot easier.If your daughter is getting chemotherapy this would be something that could really help getting the right anti sickness may take a few attempts but does make chemotherapy a lot easier.

I understand that the thought of cancer can be frightening , yet I have had it twice now and it does get better and easier. Try and make sure she has a way to keep her mind of the cancer and be prepared for a lot of new emotions . I found that keeping my self busy and distracted helped keep mind of the cancer and made the treatment easier to get through.

I'm sure her cancer team will be great getting to know the nurses and other members of staff can be very helpful and might help her feel more comfortable while there and for me it helped to make me feel less scared about the chemotherapy. I hope your daughter gets better and I know it's tough but you can beat cancer and things do get better.

Hi, thank you for replying, my daughter like yourself has completed a year of chemo and radiotherapy and the cancer has returned as a metastasis on her brain - she is starting radiotherapy on Monday - I think the thought of going through it all again has hit us really hard. I have just shown her your message and it has really helped her to stay positive - I think we both got frozen at the thought of going through it all again, the hospital told her this time would not be as bad but reading from someone else that it gets easier has helped her feel a bit more positive- we’ve also taken your advice to keep busy and distracted - the last time she had treatment was so intense I think we forgot to do that so she’s planning a trip out and room decoration as we speak. Thank you so much it has truly helped and I am so glad you are doing well. 

Hi Waquar66, I also have a rhabdomyosarcoma diagnosis in my pelvis, I start chemotherapy next week. It's incurable but treatable so there is some light for me. I understand hw scared you must be I am too. I just try to get through each day as best I can and pray for some positive response to the chemo. I am unable to walk at the moment as in excruciating pain most of the time. I hope and pray for some relief from the chemo.