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Ewing’s Sarcoma

Ewing’s Sarcoma

Posted by ChristineH on Dec 4, 2018 11:48 pm

Rare cancer. Usually a childhood cancer. Appears in connective tissues which means just about anywhere. In children, it mostly appears in bones. I feel so sad for them. The pain must be excruciating. Poor angels...

My tumour showed up in an unexpected place. It was attached to my left kidney. Everybody assumed kidney cancer. Since it was 15cm, it needed to come out NOW. I had a radical left nephrectomy with the tumour removal, so I have one kidney left that’s working very well. That was on July 27. Then, my tumour mystified everyone. Took 3 months for the labs at UHN to identify it. 

I’ve had CT scans, with contrast, and yesterday a full body PET scan. I’m hoping not to have mets, but this cancer seems to make babies like a spider plant. What ever it is, I’m pretty ready for it. I see the oncologist in 2 days and he wants to start chemo next week. 

Because it’s rare, and 90% of the times in children, there’s not much in adult treatment. But there is a protocol, yay! The treatment is 14 to 17 cycles of 3 weeks. I’ll be on Vincristine, Doxorubicin and Cyclophosphamide alternated every 3 weeks with Ifosfamide and Etoposide. 

Does anyone have experience with dealing with this specific cancer? Or maybe the drugs?

Thank you so much for all your help!
 
“Never a horse, always a zebra”

Re: Ewing’s Sarcoma

Posted by Mellybean on Apr 29, 2019 1:48 pm

Hi ChristineH‍ 

I also have Ewing's and I went through the treatment you're talking about. It's pretty rough compared to the others I've seen but the most important thing is that it is effective.  Ewings melts like ice cream on a hot day my surgeon told me.  I personally had really terrible side effects so I was treated as an inpatient, but you have to see how you handle it, everyone is different, plan to baby yourself for sure.

My advice is to be very very whiny about your symptoms, learn how to treat them as soon as they appear and don't wait until they get bad.  There are always more meds for whatever side effects you experience. Some of the symptoms get worse over time, some get easier, and you only get the doxorubicin for the first 6 (I think) cycles so it gets easier after that.

Another bit advice is to hit it hard. if this treatment doesn't work the next options don't have nearly the success rate. Better to tough it out with this treatment. To that end, ask about attempting condensed cycles.  Most children can tolerate this chemo on a 2 week cycle but adults often can't, it all depends on your white blood cells. With a white blood cell booster some adults can manage 2 week cycles.  It's hard, but it may improve your outcome.

If you are interested there is a Facebook group for Ewings warriors that might be useful, I found a lot more feedback there than anywhere else because of how rare it is.

Good luck!

Re: Ewing’s Sarcoma

Posted by Lacey_adminCCS on Apr 29, 2019 2:06 pm

Mellybean‍ 

So good to hear from you! I have thought of you often. I'm so glad you have replied to ChristineH‍ I hope you two can connect. 

How long were you an inpatient?

Great to see your name pop up here,

Lacey

Re: Ewing’s Sarcoma

Posted by ChristineH on Apr 29, 2019 2:47 pm

OMG! Mellybean‍!!! You don’t know how happy I am to find another adult with Ewing’s!

Yes, the chemo is hard, the symptoms are not good, but I’m going to push through it. 

I’ll look for the Facebook group. There’s a few Ewing’s pages, so I’m not sure which one?

Take good care of yourself!


 
“Never a horse, always a zebra”

Re: Ewing’s Sarcoma

Posted by Mellybean on May 1, 2019 8:45 pm

Hi ChristineH!  It's Ewings Sarcoma Survivors when you search, the admin's name is Bill Gowacki.  It's really targeted towards people in treatment after their first diagnosis and survivors.  There are related groups for people with recurrence or terminal diagnosis as well.  But the original group is very hopeful and there are a lot of good connections that are active with current developments in treatment as well as many individuals that are long term survivors so there's a great vibe.

I really struggled looking for other adults with Ewings as well, it's nice to talk to people that understand.  If you have any questions or just anything you want to vent about send me a message any time, I know how much it helps.

Lacey - I was an inpatient for one week for each chemo treatment and then I was at home for a week before starting over.  In total 14 weeks for chemo, 1 extra week for complications and 1 week for surgery.  All over the course of about 10 months.

Re: Ewing’s Sarcoma

Posted by ChristineH on May 2, 2019 4:13 pm

Thanks Mellybean‍! I found the group and am waiting for them to approve my request to join. 

So, am I understanding this right? You got your chemo on 2 weeks cycles? That must have been incredibly rough. I’m on 3 weeks cycles. My first cycle went fairly well, my 2nd cycle (IE) ended up killing just about most of my white cell, I was critical, and then killing so many red cells that I needed a blood transfusion. Then the real fun happened on my 3rd cycle (here’s the link: https://cancerconnection.ca/discussions/viewtopic/48/60765?post_id=289550#p289550).

I haven’t restarted my chemo yet since the burn needs to be healed first. I have a scan in May 15th.

Feel free to msg me as well if you need to vent or chat. 


Christine
 
“Never a horse, always a zebra”

Re: Ewing’s Sarcoma

Posted by Mellybean on May 2, 2019 9:41 pm

Hi ChristineH,

That is such miserable luck, I hope it is at least healing well now?  Stories like yours make me so sad because my port was such a boon to me.

I did get my chemo on two week cycles, it was very difficult and only possible using a white blood cell booster and many blood transfusions.  My team wanted to be as aggressive as possible because there aren't any good options if the first line treatment doesn't work.  Unfortunately in my case we just didn't catch it in time, so even as aggressive as we were, I had recurrence within six months. I really look at the first set of treatment as something that you endure, it's very different from the kind of treatment that you live with long term like a lot of cancers now use and like I'm on now. 

Cheers,
Melissa

 

Re: Ewing’s Sarcoma

Posted by MChild on May 6, 2019 3:11 pm

I’ve just finished chemo round 8 of 14 for Ewing’s. I’m on a 21 day cycle and had my surgery after four rounds. Surgery did not achieve clear margins though. Does anyone have any experience with that? It’s definitely hard to find other adults with it! 

Re: Ewing’s Sarcoma

Posted by ACH2015 on May 6, 2019 5:08 pm

Hi MChild‍ 

I am going to tag ChristineH‍ and Mellybean‍ for you. I see you've already found this thread on Ewing's Sarcoma, and hopefully when they see the tag either or both can respond with their experiences and knowledge with you.

Welcome to the site, I hope this helps you connect. I have a rare cancer myself, and I understand the difficulties and frustrations in connecting with people in a similar situation to ourselves. But we do for the most part find those much needed connections and people to share with.

If you would like to tag someone yourself, simply type the @sign and immediately start typing their name. A list will appear and simply click on the person. You will know it's worked because like in this post, their name will turn blue and - your done.

Keep well and in touch.

ACH2015  Andy.

Re: Ewing’s Sarcoma

Posted by ChristineH on May 6, 2019 11:38 pm

Welcome MChild‍! Wow! There’s now 3 of us adults with Ewing’s. 

I’m 53. Found a mass on my left kidney. Had to remove ASAP as it had taken the kidney over. Turns out I was lucky enough to get clear margins, so they got all the tumour. All the dr’s assumed kidney cancer, that’s why they took it out that fast. Because my primary tumour is out, I’m starting with 12 rounds on VDC/IE since I don’t need the ones before surgery. Then we’ll see. 

I’ll let Mellybean‍ explain her story. She’s ahead of us in the process. 

Regarding negative margins, I read lately about someone who had negative margins. I believe it was in the breast cancer category. There’s a lot in common between cancers, so feel free to read other areas. Or you could start a topic in treatments and side effects. 

Good luck! Feel free to message me if you need to talk or vent!

Christine :)



 
“Never a horse, always a zebra”

Re: Ewing’s Sarcoma

Posted by ChristineH on May 6, 2019 11:44 pm

MChild‍, it was Diana BC‍ who mentioned negative margins a couple of months ago. She might be able to answer some of your questions. 


Christine
“Never a horse, always a zebra”

Re: Ewing’s Sarcoma

Posted by Mellybean on May 7, 2019 12:20 am

Hi MChild‍, 

It is hard to find other adults for sure, there is a Facebook group called ewings sarcoma warriors that I have had good luck with. A lot of the active community is parents of children with Ewings but there are adults too and lots of success stories. 

My surgery had clear margins the first go around but I have spoken to others that couldn't get clear with surgery, usually due to location I think, but that is where chemo and radiation clean up. Did your doctor talk you through the results and explain an action plan?

Cheers,
Melissa 

Re: Ewing’s Sarcoma

Posted by MChild on May 8, 2019 7:44 pm

They’ve added 4 rounds of chemo (was initially going to do 10). They’ve added radiation, but have yet to decide the plan. I’m in Northern Ontario and my oncologist is in Toronto, so there is usually a delay in receiving and sending info. I’m a member of an Adult Ewing Sarcoma group on Facebook, which has been really helpful. It seems some of them have surgery to clean up the margins, but they’re all American. I’ve asked about it, but waiting for a response. Hopefully I’ll find out soon! 

Re: Ewing’s Sarcoma

Posted by Diana BC on May 10, 2019 10:48 am

Hi

my first lumpectomy did not have clear margins.  It meant that there was a risk that they had not removed the whole tumour. 

In my case the surgeon went in a second time.  Not only were the margins clear but there was no cancer at all in the second sample.  He says sometimes the fat moves a bit in the tissue that is removed and so it can appear like there are cancer cells right at the margin but in my case they had got it all the first.  

I was happy though.  That second surgery made it 100% clear that the cancer was removed.  

Good luck. 

Diana

Re: Ewing’s Sarcoma

Posted by decesased on Jun 22, 2019 6:14 pm

I am on my husband's account here... he has Ewings.  He is 52.  Discovered it in his neck last summer.  He also did that heavy duty chemo treatments.  
Unfortunately his tumour grew through the treatment, so they discontinued.  It didn't respond to radiation or surgery either.  I guess it is called recurrent Ewings now
Someone mentioned a Facebook page, for recurrence or terminal patients.  Could you share that Facebook page name.

thanks

Re: Ewing’s Sarcoma

Posted by ACH2015 on Jun 22, 2019 6:46 pm

Hi Sabastople‍ 

I am going to tag MChild‍ ,as she referenced the Facebook group in a previous post.

I am also tagging  ChristineH‍ and Mellybean‍ ,(hello my friend 🙂), for you. I am sure they will share with you as well.

I have been dealing with cancer myself (metastatic adenocarcinoma of unknown primary origin) since 2016, and I saw your post.

I hope this helps you get some contacts and information to share.

Keep well

ACH2015 - Andy.

 

Re: Ewing’s Sarcoma

Posted by ChristineH on Jun 23, 2019 11:42 am



I’m sorry to hear the chemo is not working as well as it should. I believe Mellybean‍ might be in a recurrent phase too. 

I’m part of 2 Facebook groups. The first one is called Ewings Sarcoma Warriors & Survivors. The group has mainly parents of children affected or young adults. The second group is called Adult Ewing’s Sarcoma. Both groups have very good information being shared. 

Good luck with everything. Please keep us in the loop on how you’re doing 😀


Christine 
 
“Never a horse, always a zebra”

Re: Ewing’s Sarcoma

Posted by Mellybean on Jul 12, 2019 3:23 pm

Sabastople‍ 

My ewings is recurrant as well, I am receiving palliative treatment now.  I am also a member of Ewings Sarcoma Warriors & Survivors but I am no longer active as it is really geared towards people in the first phase of treatment.  I am also a member of Relapsed Ewing's Sarcoma Support and Terminal Ewing’s Sarcoma Cancer Resource.  The adult group sounds interesting as well, I might have to check that out.

Apologies for the slow response

Re: Ewing’s Sarcoma

Posted by ACH2015 on Feb 25, 2020 12:28 pm

Hi WerBeu‍ 

I noted you have not had success in contacting members dealing with Ewing's Sarcoma. I thought I'd tag you and ChristineHMChild‍ and Mellybean‍ into this older thread of Ewing's Sarcoma discussion posts. Sometimes posts are missed, or members are no longer active on the site.

I know there was also mention of an online Face Book support group Osteosarcoma and Ewing's Sarcoma Support Group and I found the link. Hopefully some of those I tagged will reply here and connect with you.

Hope this helps you and your wife connect with others in a similar situation. I understand Ewing's in adults is rare, and can add to the challenge of finding others in similar situations with rare cancers.

Keep well

ACH2015