Cancer Survivors Network - rhabdomyosarcoma survivor - Comments

RHABDOMYOSARCOMA SURVIVOR

JAMES66 — Sat, 02 Oct 2010 20:03:15 -0400

Hi, 43 year survivor I had 3 surgeries in 1966 the last removing my eye.Chemo Radiation
at age 6, M.D. Anderson Houston TX I was given two week to live at the time I went in and
50%-50% after surgeries and treatment. I will be 50 on my next birthday and I have been married for 26 years with 4 children. Now I am looking forward to retirement and time with my grandchildren.
DON'T EVER GIVE UP HOPE.
God is the creator of the universe and you can be healed.
James

RE

martynkatie1 — Thu, 13 May 2010 13:44:41 -0400

Alesia Shute is a childhood cancer survivor and wrote her story. Check out her website because the two of you might be able to help each other. www.everythingsokaybook.com

rhabdo

ty — Wed, 12 May 2010 19:16:03 -0400

Hi Byrd Just reading all the comments on this site. My grand daughter (who I raise) was just diagnosed with alveolar rhabdo in January. She was 15 and just turned 16. She has finished 29 radiation treatments and is on week 15 of 42 very harsh chemo treatments. It has been hell on her. Her body is ravaged and she is so very weak. Your story gives me hope. Her tumor was in her sinus cavity, size of a golf ball and pushed on her right optic nerve leaving her blind in her right eye. She has been through so much already and we have such a long way yet to go.

Debbie

InvictusAngel — Wed, 12 May 2010 10:42:04 -0400

First I wanna say I am so so sorry I dont know if you posted somewhere else on the boards or not about Kyle's passing away on March 23rd 2010 my heart is breaking for you and your family, and for Kyle.. I seen an email that came to my phone from the rhabdo site, I dont know how to contact you on there but just wanted to say we are here for you!
Jenn
fellow rhabdo warrior

R.I.P Kyle

Survivor

Byrd1313 — Thu, 11 Feb 2010 08:58:23 -0500

I, too am I survivor. I was diagnosed at 10, with rhabdomyosarcoma and had a tumor in my right sinuses. I was given a 20% chance of survival and am still ticking 20 years later. I do have other health issues resulting from the chemo and radiation, but nonetheless, I am here. As every one as said, keep fighting!

I am new to this site and

amybrook — Wed, 10 Feb 2010 00:08:30 -0500

I am new to this site and not really sure if I can be of any help but... if I help just one person I feel like my cnacer was not in vain. I was diagnosed with embroinal (sp?) Rhabdo when I was ten. If was located at the base of my brain in my left jaw and sinus area. I went into the dr on a monday for some minor swelling. They said I had an infection and sent me home. I went back on Thursday and they diagnosed me that day. They said the tumor had grown from the size of a grape on Monday to the size of a grapefruit on Thursday. They gave me six weeks to live w/o treatment. They told my parents even with the tx the outcome was bleak. I received the max amout of radiation and chemo for two years. I am 33! I try to go up to the hospital and talk to kids who are going through cancer and let them know they can't give up, they have to fight it. They can't feel sorry for themselves and just give in even though they want to sometimes. They have come so far since I was sick and the treatments and options for de bulking the tumors are so much better than before. They laugh at the hospital and say I was a guinnea pig but b/c of me kids today don't have to go through quite as much and that really makes me feel like I was there for a reason and the pain and suffering all had a purpose. They also told me I would never have kids ... I have three amazing beautifull boys. There is hope, and lots of it. Never give in and never give up are the best words for any one any age going through cancer. You always have to look ahead at the people who are fighting with you and all the love and hope you have to spread in your future.

thank you for your uplifting story

Deli4gs — Tue, 02 Feb 2010 20:30:00 -0500

Tom I now know there are several types of rhabdo. Alveolar rhabdo, I now realized is very aggressive and prognosis is bleak. The young girl I know was diagnosed at age 15 so I am thinking your rhabdo may be very similar to hers since you were diagnosed at around the same age. Because you are here to share your story, that family is hopeful. Could you possibly provide more information about your journey?

Thank you,
Jackie

Love the Survivor Stories

dlrobins — Tue, 02 Feb 2010 03:43:16 -0500

Tom, Thank you for posting... it is always great to hear about survivors of cancer, but most especially rhabdo. Kyle is doing well... has 4 treatments left. Reimage in Jan showed a 2.6cm nodule left. Considering what he started with, we are overjoyed with the progress. Will continue to battle what's left. The treatment is aggressive, has included 5 chemo drugs as well as radiation. He is a warrior though, and we are determined that he like yourself will be posting on this site in 35 years to come. You are so right about diet and fluids. With radiation he lost 30+ pounds, but his appetite has come back and he is putting weight on again. Would like to hear more about the long term affects you have experienced from the radiation and chemo, as Kyle is only 22 with many years ahead of him. Thank you so much for taking the time to post. Debbie and Kyle

Same Here, Jim

Tom C. — Thu, 28 Jan 2010 01:37:43 -0500

I am a 35 year survivor of rhabdomyosarcoma. I was diagnosed at 17 and am now 52. I too am healthy.

Just as a point of reference as you too are a long term survivor, they are finding now that adult survivors of pediatric cancer treatments may experience other health problems due to types and treatment dosages administered back in the early 70's and 80's.

Studies have found that some drugs carry long term toxicity effects which could weaken the heart muscle or in the case of radiation, could lead to the growth of other tumors down the road. There is a study being conducted at Memorial Sloan Kettering Cancer Center in NY tracking such side effects in adults. Just something to keep in mind when you go for your next physical to mention to the doctor.

Great story you have. Continued good health to you.

Tom C.

Another Adult Survivor of Pediatric Rhabdomyosarcoma Out Here

Tom C. — Thu, 28 Jan 2010 01:27:16 -0500

I am 52 years old. When I was 17 I was diagnosed with rhabdomyosarcoma. I was given a 25% chance of survival by some of the best doctors in NY. Here I am alive and well 35 years later.

Debbie, let Kyle know that the road ahead may not always be smooth, but it is passable. Make sure he eats right and drinks plenty of liquids especially during chemo to flush it from his system. Staying away from crowds of people while on treatment may lesson the chance of him getting sick which could delay treatment, etc.

As with Jim's posting, there are many adults that are pediatric cancer survivors.

I wish Kyle the best.

Tom C.

Thank You for sharing Jim

motbzaz — Sun, 10 Jan 2010 14:41:54 -0500

Your words are very encouraging...thank you for posting. It means so much to those who have been fighting this cancer that there really are people out there that are living a future and a life well beyond the treatment. God Bless.

Rhabdo

dlrobins — Mon, 14 Dec 2009 21:07:16 -0500

Jenn, You are not alone. Although it is my son who is being treated for rhabdo, I feel every treatment with him. Kyle is 22 and was diagnosed in July of 09. His was in the neck, with a tumor the size of a fist before treatment began. Presently he has finished 28/28 treatments of radiation, and 6 cycles of chemo. He has credit for 2 cycles of VAC before we had to switch treatments, but now has 6 cycles of VDC and IE left to go. The tumor has responded well and can no longer be felt. Dr.s will reimage after several more rounds of chemo to assure no cancer cells. Keep positive... I know it is hard, but believe that there are better days ahead.Please feel free to email me if you would like to chat. dlrobinson1004@gmail.com God bless you, although this is a rare disease, it does strike adults as well as children. Hang in there your not alone. Love, Debbie

rhabodomyosarcoma survivor

InvictusAngel — Sun, 06 Dec 2009 01:20:10 -0500

Hi I have posted on the emotional support board didnt even think til now to check the kids cancer part dont know why not since was told thats mostly who is found with this just been a bit hard for me to wrap my brain around being 32 single mom and diagnosed with what they call a kids cancer. I was diagnosed in Sept with rhabdomyosarcoma cancer cervical and endometrial uterian I have had 4 surgeries since and started chemo this week looking at 44 weeks of chemo ahead of me... it would be great to connect with some ppl who have been through this or currently going through treatment support system here is very slim for me personally and the chatroom and these boards are a God send from feeling alone.Thanks Jenn

reply to stinkerthecat

dlrobins — Fri, 04 Dec 2009 11:33:16 -0500

Read your post today. I don't go on very much... Your granddaughter is very close to my son Kyle's age. I am so sorry for this diagnosis, but one thing cancer cannot take from us is HOPE. Would love to communicate with you if you feel comfortable. My email is dlrobinson1004@gmail.com Your grandaughter is inour prayers. Love, Debbie and Kyle Robinson

granddaughter with same sarmona as yours--please write back!

stinkerthecat — Tue, 17 Nov 2009 16:56:59 -0500

We have a 20 year old granddaughter who was recently diagnosed with rhabdomyia sarcoma---she is taking chemo at barnes jewish in st louis and we need all the support we can get---hers started in pelvic area and she has in her tongue and spine---please write back--thanks

rhabdomyosarcoma survivor

dashw — Sat, 23 Aug 2008 23:16:29 -0400

My 5 year old daughter was diagnosed with rhabdomyosarcoma at the age of 3. She is now 16 months off treatment and is doing well. She is now on 4 monthly scans. I would love to connect with anyone who has been through this or help support anyone who is currently going through it.