Ewing’s sarcoma - Daughter recently diagnosed

Hi April2021 

I'm sorry to read of your daughter's diagnosis and situation. I don't have this type of cancer but by replying to your post it will place it at the top where it is more likely to be seen by other members. If you feel you need more support, the Macmillan helpline is open, this is the link to contact

https://www.macmillan.org.uk/about-us/contact-us

Best regards

A x

Thanks.

Hi April2021 

Sorry to hear about you daughter's diagnosis and I hope you are both doing well,

My stepdaughter Ellie (22) was diagnosed in Oct 2022 with Ewings Sarcoma (Pelvis) that had also spread to lymph nodes and lungs. Not too dissimilar to your daughter the local GP hospitals diagnosed Ellie first with minor muscle swelling take pain killers, then later blood clot's which meant 4 months had gone by before detecting the tumour and a rush to UCLH to start Emergency Chemo VDC/IE with radiotherapy 30 days nearer the end of the 14 cycles. 

Radiotherapy also said they would consider radiotherapy on the lungs. However this did not happen.  

When the 14 cycles finished we were told that scans would take place 8-12 weeks after the last cycle to give time for the chemo to complete and for the inflammation from radiotherapy to reduce so they could get a true interpretation from the scans. 

After scans were done we returned to see the Oncologist who informed Ellie that the Metastatic on the lungs had progressed however the Primary Tumour had reduced down to less than 1cm.  We wondered at this point why was Radiotherapy not done on the lungs if it was being considered. Why were scans not done earlier, why was it left 8 weeks unmonitored. 

We had a second opinion who said that doing scans earlier would not have made a difference to the progression, but that they probably would have arranged scans for 4-6 weeks. We feel we should have pushed harder for radiotherapy and or for earlier or more scans, and wonder if radiotherapy could have made that difference, if being considered why didn't they do it? .

I only mention this as we feel we should have asked for a second opinion sooner, the second opinion we got was the same which did provide us with knowing that everything that was / is being done was the right thing whilst also providing us with more answers to questions we did not want left unanswered. 

It is nearly a year since Ellie started Chemo and it is only now that we are all really learning the ropes and how to navigate the NHS.  If only we knew then what we know now.    

Through lots of research online, we found the American organisations to be very informative and very helpful when contacting them on using online chat via the websites. Maggies are also very good for popping in for a chat and providing information about local groups and charities if you have one locally.

Everyone is different and I really hope that your daughter's is coping well and that her treatment is going well. 

What we noticed throughout Ellie's journey so far, and I wonder if it is the same for you?  Is that you have to really need to research everything yourself and keep asking questions and pushing all the way to get things to happen. 

We have also recently found some great assistance from CAM's Complimentary & Alternative Medicines.  We started looking into this after reading Scott Davies story on social media.  With further research and looking at trials in Japan and other ways other countries treat cancer we started to open new information routes that we wish we had known about sooner. 

Although though discussions about CAMS with the CNS team we were advised that this can be very costly and there are ne miracle cures, and that is not science based,  we have found the CAM practice to very professional and not as costly as we thought. With no promises of miracle cures but very good advice about lifestyle changes diet choice and herbal supplements that can help with the symptoms of chemo and more.  (it was only when we discussed this with the CNS team that they said they could refer Ellie to an NHS CAM centre, but it takes a long time to get an appointment up to 6 months, so we went down the private route). 

Ellie has now been taken as a patient though a CAM practice and alongside other things taking CBD oil, the CBD oil has really helped with her sleep patterns by the way. The oncologist has been great and discussing the use CAMS and CBD and advised not to take CBD 3 days before during and 3 days after chemo, if considering anything like like we did I would be sure to discuss any CAM with your daughters Oncologist before going ahead.  

We have also been a reading a book "The Cancer Revolution Integrative Medicine the future of Cancer Care. Which has a wealth of information on CAMS and organisations if it is of interest to you I would highly recommend reading it. 

Before Ellie's diagnosis I must admit I was not one to really consider Herbal Medicine but now Ellie, Ellies mum and myself are really glad we looked into it and feel it can really be of benefit to Ellie. It is not everyone's cup of tea and the Oncologist was right in telling us to be careful when looking for CAM practitioners online as there a lot of charlatans around so was wary and made sure we found someone who was qualified and that would work with Ellies Oncologist team.  I would though if considering anything always consult your daughters oncology team about anything being considered as some herbs can interact with traditional medication.  

Sorry for the lengthy reply and hope you all are doing well 

Kev

Thanks so much for the reply and information.  Our daughter should be starting cycle 13 tomorrow but was hospitalised with neutropenic sepsis on Friday.  All ok now but chemo delayed by a week.  She’s coped very well with all her chemo the team at the Churchill are fantastic and it’s one of only a few sarcoma units and we feel lucky she’s under their care.    She will have a scan when chemo finishes and will start RT soon after for 4 weeks.  A PET scan will take place later.  Her last scan was after cycle 7 and the tumour had shrunk from 21cm to 6cm.  We hope the downward trend has continued.  We too make use of Maggies - they are a fantastic support to all of us - so lucky to have one next to the hospital.  I do hope your stepdaughter is keeping well.