Crohn's Disease Forum » Parents of Kids with IBD » MLS and her cancer journey

06-17-2013, 02:32 AM   #1
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Mylittlesunshine's Avatar
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MLS and her cancer journey

I'm not sure where to start but wanted
To explain why I've not here much.
In middle of April I went to my GP
Because my left thigh a the top swelled
To triple the size and very painful
Even worse at night.

Anyway the doctor told me that I had
Skin infection and gave me
Strong antibiotics and said it would be
Better after 48hrs.
Hmm how wrong she was.

5 days after taking antibiotic it was worse
I took myself to local A&E
They did bloods and said no infection
Or signs that I had one
Then was sent for x-ray.
The X-ray showed and abnormality
But they wouldn't say WHAT.

I had to wait 2 days to have appoint with
A bone speaicalist,
They booked me for MRI
Which revelead I had a large tumour
In new bone that has grown.

To cut the story short I was sent to a speaical
Tumour centre who diagnoised me to be

On the 1st of July I go for a full
Body bone scan to check it hasn't gone
Any where else.
Then on the 9 th of July I'm scheduled
To have surgery for 9 th July
Where I have half my thigh bone removed
With the tumour.
Also possibility that I have to have chemo .

I just wanted to explain what was going on
As my friends have been so
Great, caring towards me and my family
I thought you all deserved to know.
Currently on EN
Neacate LCP
Calcium sandos
Inhalers x3
Pred tapering
06-17-2013, 02:40 AM   #2
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upsetmom's Avatar
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Location: New South Wales, Australia

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....I'm so sorry.

I hope everything goes well with your surgery and it hasn't spread.
Daughter dx CD March2012...
(aged 14)

Currently on:
125mg Imuran

Dx Premature Ovarian Failure 2014

Last edited by upsetmom; 06-17-2013 at 05:04 AM.
06-17-2013, 04:55 AM   #3
Catherine's Avatar
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Wishing you a successful surgery. Thinking of you and your family.
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
06-17-2013, 05:19 AM   #4
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Oh my goodness Mls......I am so very sorry to hear that you are going through this.

I hope more than anything your scan is clear of any further problems and your surgery and recovery are smooth and uneventful.

Sending loads and loads and loads of love, luck and healing thoughts your way.

Dusty. xxx
Mum of 2 kids with Crohn's.
06-17-2013, 06:20 AM   #5
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Location: California

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OH MLS! I am so sorry to hear about all of this. Definitely praying for you and the surgeons and that all has the best possibke outcome!
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-17-2013, 06:42 AM   #6
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Location: Sydney Australia

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Sending you hugs and best wishes...

06-17-2013, 07:01 AM   #7
Jane and Nick
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Dear MLS, I am sending you lots of positive thoughts, I know how much anxiety comes along with waiting for the scans and then the results, we to are waiting for my husbands scans. Please try and stay as positive as you can because attitude and mind sett are SO important, you have to believe you can beat this sneaky son of a b. My hubby has lung cancer that spread to his brain, never smoked in his life, he is now after many courses of chemo and radiotherapy tumour free in his brain and seems to be doing very well. Keep positive and strong, sending love.
DOB 13/8/2001
Height 5ft 2" 48 kg
Salofalk x3 twice a day
Imuran 100mg
06-17-2013, 07:13 AM   #8
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Location: Ontario

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I'm so sorry to hear of how much you've been dealing with! Also sending lots of wishes for the best possible outcomes from both the surgery and scans!

Keeping you in my thoughts and prayers!
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-17-2013, 07:14 AM   #9
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Location: Michigan

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Hugs and Prayers

Do they think they has something to do with your heart condition?
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
06-17-2013, 07:30 AM   #10
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Dear MLS, I am so tremendously sorry to hear your news. I am praying for you.
06-17-2013, 07:33 AM   #11
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Sending prayers for you that your scan will reveal no more affected areas, that surgery and recovery goes very well and that you are able to find strength and peace. And I will continue to send these.

Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
06-17-2013, 08:14 AM   #12
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Location: Toronto, Ontario
(((((((MLS)))))) I'm so sorry to read this. I hope you get good news with the scan and that the surgery will take all of the cancer. I will also pray that you do not need chemo.
Samantha, AKA Devynn's mom

Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
06-17-2013, 08:24 AM   #13
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Join Date: Mar 2012
Location: Alabama
I am so sorry you're going through this. Lots of good thoughts and prayers for you.
06-17-2013, 09:22 AM   #14
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MLS you know already how much support and prayers I've been sending your way! Hope the body scan goes well. Take care and stay positive dear friend!

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-17-2013, 09:37 AM   #15
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MLS, so sorry to hear this!! Sending prayers and hugs your way!
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-17-2013, 09:58 AM   #16
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Location: Lafayette, Colorado

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How frightening! I'm very sorry and wish you the best outcome possible!!!
Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind. Bertrand Russell
06-17-2013, 11:03 AM   #17
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Location: Falkirk, United Kingdom

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Thinking of you often! Hope things go well for the surgery.
06-17-2013, 05:16 PM   #18
my little penguin
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My thoughts and prayers are with you and your family
DS - -Crohn's -Stelara -mtx
06-17-2013, 05:29 PM   #19
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Join Date: Feb 2012
So very sorry about your diagnosis. I hope the treatment goes as smoothly as possible and this is soon fully in the past for you.
06-17-2013, 08:40 PM   #20
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MLS - Sending up tons of prayers for you, your family and the doctors!!!!

God bless...


Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Priesthood Blessings
06-17-2013, 11:00 PM   #21
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Location: Minnesota

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Been thinking of you all day. Just one day at a time, MLS...
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-18-2013, 01:02 AM   #22
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Location: Alabama
So sorry about what you are going through. I hope the surgery goes well. (((Hugs)))
06-18-2013, 05:10 AM   #23
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Location: Cincinnati, Ohio

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I will pray for you MLS. (((Hugs)))) I know this is unbelievably hard on you right now. Try to keep in good spirits and take one day at a time.

We are all here for you!
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
06-18-2013, 12:32 PM   #24
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Mylittlesunshine's Avatar
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Thank you so much for all your
Kind messages it's so kind of you all.
It's like a nightmare that won't go
Away x
06-18-2013, 12:34 PM   #25
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Farmwife- that was my question
About my heart being connected
To the cancer, they don't know
They said they need to put all the pieces
06-18-2013, 12:37 PM   #26
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Jane and nick
Thank you for your kind message
I really hope your husbands scans
Are good news, hugs x x
06-29-2013, 02:49 PM   #27
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For appointment for my pre op on 1st July
And full body scan.
Then a week to go before my dreaded surgery .
06-29-2013, 02:51 PM   #28
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Location: Falkirk, United Kingdom

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Was just thinking about you today! Good luck for the pre-op and then the surgery. I really hope it goes well and your recovery is quick. I will be away when you have your surgery, so I will not be able to send get well wishes then. Will check in once I get back!
06-29-2013, 03:31 PM   #29
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Location: New South Wales, Australia

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Thinking of you ....
06-29-2013, 05:01 PM   #30
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Location: El paso, Texas

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Hugs and Prayers for you.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.

Crohn's Disease Forum » Parents of Kids with IBD » MLS and her cancer journey
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