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Postby Lydia666 » Tue Dec 04, 2018 7:33 pm

Doing really poorly friends. I have developed lymphedema in legs, it is awful , can hardly walk.
I also have nephrostomies in place since my kidneys got blocked by cancer. I am in an awful state , still at the. Hospital until Friday possibly. I miss my babies , i need to be home.

What's the treatment for lymphedema ? How did you improve? Did it improve?
I keep thinking of the initial diagnosis; why didn't i do folfox afterwards? Docs did not recommend, ok, but what if i had done it, i wouldn't be here with massive cancer in abdomen and lymphedema.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Posts: 159
Joined: Sun May 13, 2018 10:11 pm

Re: Lymphedema

Postby Trying » Tue Dec 04, 2018 8:13 pm

Im sorry you are going through this. Sending positivity your way..
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets and peri metApril 2018
Folfox as of June 2018
Down to 2 mets in liver dec 2018.

Posts: 93
Joined: Mon Apr 30, 2018 2:36 pm

Re: Lymphedema

Postby Koreysue » Tue Dec 04, 2018 8:18 pm

I do not have any experience with lymphadema but I think I read that physical therapy can be of benefit... not sure though. Also just wanted to say sorry to hear of you struggle. Hopefully someone else on here will have some info
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2

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Posts: 127
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Lymphedema

Postby mobrouser » Tue Dec 04, 2018 10:35 pm

Lydia I am sorry to hear about your new challenges.
What can help with lymphedema? Not knowing how severe it is (and more importantly not being a physician) I can only offer some general suggestions. Compression stockings may help, being sure to drink lots of water (assuming this won't cause problems because of your kidney issues), massage and leg flexes can help too. Basically all the things a doc might have told you to do if you had water retention during pregnancy. Are the doctors not giving you any advise?
Has there been any discussion about your peritoneal mets? Are you a candidate for Hipec?
I hope you get some answers pronto!!

CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

Posts: 650
Joined: Sun Sep 13, 2015 6:16 pm

Re: Lymphedema

Postby mariane » Tue Dec 04, 2018 11:19 pm

Hi Lydia,
We were diagnosed at approximately the same time. I remember your story from back then. If I could recommend you something, it would be genetic profiling of the tumor. Sometimes cancer mutates quickly. More mutations could mean more susceptible to chemotherapy meds. I am sure, you have great oncologists on board. I only would like to remind Cynthia's story. Cynthia , who has ongoing success with Keytruda. I would send tumor samples for new genetic tests to Foundation One. I sent my own tumor to Caris back in 2015. I wish you best of luck! I will remember you in my prayers.
Last edited by mariane on Wed Dec 05, 2018 8:38 am, edited 1 time in total.
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Fluff Bottom
Posts: 67
Joined: Fri Oct 23, 2015 8:13 am

Re: Lymphedema

Postby Fluff Bottom » Tue Dec 04, 2018 11:28 pm

Lydia, I’m sorry sorry that you are going through this! I don’t have experience with lymphedema but I’m sure you will get some good advice from our other knowledgeable members.

As far as the FOLFOX goes, I did 12 rounds and still ended up with lung, liver and peritoneal mets 2 1/2 years after I finished treatment.

I hope you will be home with your babies very soon! Take care and keep us updated when you can.
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets

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Joined: Sun May 25, 2014 1:31 pm

Re: Lymphedema

Postby peanut_8 » Tue Dec 04, 2018 11:49 pm

Lydia, I'm so sorry this is happening to you, and your family.
female, diagnosed Jan 14, RC stage 2a, age 56
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Posts: 282
Joined: Mon Oct 01, 2018 4:29 pm

Re: Lymphedema

Postby Punky44 » Wed Dec 05, 2018 1:09 pm

You are in my prayers—so sorry you are struggling.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Lymphedema

Postby betsydoglover » Fri Dec 07, 2018 5:26 pm

I know nothing about lymphedema, but I do know that I was in PT for knee replacement, they had brochures lying around for lymphedema PT - geared toward mastectomy patients, but I suspect PT might help with any kind.

Wishing you the best.
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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