Incidental LAMN tumour

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macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Incidental LAMN tumour

Postby macpudd » Mon Feb 22, 2016 12:43 pm

Hi All,
When I was diagnosed with my main tumour in my cecum there was an incidental finding of a LAMN tumour of my appendix, which combined with the main tumour had caused a blockage of my bowel which led to my hospitaliziation, anyone else have similar experience?
Regards
Macpudd
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Incidental LAMN tumour

Postby Deb m » Mon Feb 22, 2016 3:38 pm

my husbands tumor was also in his cecum, which penetrated the orifice of his appendix. His cecum, appendix, 15 inches of colon(ascending) and terminal ilium were removed. He did not have a blockage though. He did his 12 hits of folfox and has been fine, ned for 5 years. His official stage was IIbT4a.

deb m

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Incidental LAMN tumour

Postby macpudd » Mon Feb 22, 2016 4:07 pm

Deb m wrote:my husbands tumor was also in his cecum, which penetrated the orifice of his appendix. His cecum, appendix, 15 inches of colon(ascending) and terminal ilium were removed. He did not have a blockage though. He did his 12 hits of folfox and has been fine, ned for 5 years. His official stage was IIbT4a.

deb m

Hi deb m,
I seem to have had similar surgery to your husband, except I had some of my small intestine and some of the transverse colon taken as well and what the doc said was other tissues as well. I did not ask a lot of questions after my surgery as at the time I really did not want to know too much, however I now feel ready to find out more and intend to ask for my pathology report when I next see my doc in a few weeks after my scan. I do remember that she did say it was quite rare to have the T4 tumour in my cecum and then this LAMN tumour in my appendix. Its very encouraging to hear that your husband has been ned for 5 years. Like you have been to your husband, my wife has been such a great support to me, and I would not remember most of what was said to me except that my wife takes notes at all my appointments and has kept a written record since I was diagnosed. It all seemed so sudden at the time as I was given the bad news on a Monday and had surgery on the Wednesday.
Does your husband have any problems with adhesions or complications from his chemo, I had problems with neuropathy and low blood counts during chemo which meant delays between cycles and reduced doses for the last four cycles.
Sorry if I am rambling on, I hope my questions dont bring back bad memories or upset you. Thanks for taking the time to reply.

Regards
Macpudd
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Incidental LAMN tumour

Postby Deb m » Tue Feb 23, 2016 10:09 am

Hi Macpudd,

First of all, I don't mind answering your questions and your not rambling on. This is what this board is all about, helping others! While my husband was undergoing chemo, he did have some issues with low wbc and plt counts. He had his treatments delayed a few days on two or three occasions because of this. Within about two months of finishing chem, all his blood counts returned to normal. He also had neuropathy on his feet and hands. His hands are fine now, but he still has it on the bottom of his feet thought it doesn't slow him down any. He has some issues with loose stools and diarrhea, but imodium seems to keep it under control. He never had any problems with adhesions. My husband did have about 2-3 inches of his small intestine removed as well, that's the terminal ilium, where the large meets the small intestine. We were also told that T4's are not to common and give you a much poorer prognosis, but that has not been the case so far with him and I bet it won't be the case with you either! Because of his T4 status, he was scanned every three months for the first two years, then went to every sis months for a couple of years and is now just once a year. This will be his fifth year scan coming up in March. If he's still clear, Our oncologist at MDA in Texas wants to follow him for two more years but replace the ct's with mri's to help reduce radiation exposure. I think after those additional two years, if all clear, we will probably be cut loose at last!

Overall it's been a very stressful experience to say the least, but I'm so grateful that he continues to do well(ned) and is able to live a completely normal life. So many times I thought we would never get to this point.

We have two boys that are now 20 and 18 years old. Even though all the genetic testing on my husband came back ok, I still worry about my sons future health. We were told that they should have their first colonoscopy at age 40 instead of the normal 50 year mark. I'm going to push for them having it even earlier than that! Did you have genetic testing done?

Also, jut to be complete, my husband's cells were moderately differentiated (low grade) and he had 34 nodes removed that were all clear. This should be noted in your Pathology report.

Once again, hoping for both of us to have clean scans,

deb m

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Incidental LAMN tumour

Postby macpudd » Tue Feb 23, 2016 12:08 pm

Thanks for replying Deb m,
Yes I had genetic testing done, but it did not show up any predisposition to bowel cancer even though my mother died from it when she was 59 years old. We have four adult children, 30, 29, 26, 24, (we started young, being together 34years) two of them have had clear colonoscopies and the other two will be having their colonoscopies in the next few months. I am on the same follow up as your husband with scans every 3 months. My neuropathy is mostly gone now except for a very slight lose of touch in both hands and feet but I think it is slowly improving, I have trouble using touch screens such as on my phone etc. Also alternate between diarrohea and constipation but thankfully do not have any accidents. Biggest problems I have at the minute are this pain from adhesions and poor concentration and tiredness. I find it reassuring that both your husband and myself have been recieving similar medical care, because in Ireland there is often a lot of criticism of the health services in the media, so its good to get a perspective from a different country. I cant seem to find much information about this LAMN tumour of the appendix but hopefully the doc will be able to tell us more on my next appointment, at the time of my surgery she said it was slow growing and nothing like as dangerous as the T4 adenocarcinoma tumour. Hope everything continues to go well for your family and thanks again for replying.
Regards
Macpudd
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Incidental LAMN tumour

Postby Deb m » Tue Feb 23, 2016 2:58 pm

I'm glad to help. Let me know how you scan goes!

deb m

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Incidental LAMN tumour

Postby macpudd » Mon Mar 07, 2016 2:04 pm

Had a CT scan on 2/25/2016, got a phone call from the Doc's pa today to say no change from last scan in Nov so still ned and will see Doc on 3/18/2016 :D
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

DarknessEmbraced
Posts: 3524
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Incidental LAMN tumour

Postby DarknessEmbraced » Mon Mar 07, 2016 2:38 pm

Congratulations on still being NED! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Goldfish
Posts: 5
Joined: Tue Mar 08, 2016 10:45 am
Location: The Netherlands

Re: Incidental LAMN tumour

Postby Goldfish » Tue Mar 08, 2016 11:28 am

Congrats on NED!

During HIPEC to kill a few mets in the Cavum Douglasi and the precautionary removal of the remaining part of my sigmoid (got me a colostomy), a LAMN in my appendix was unexpectedly identified. The appendix was removed.

The LAMN was considered to be quiet uneventful and should not harm my changes to survive, according to the oncologist.
dx at 42yrs, kids 6 and 3, married.
07/15 SR CRC T4,N2,M1 (peritoneum), 8/39, CEA 1.4
09/15 CEA 3 start Sandwich procedure Capox 4rnds around HIPEC
10/15 CEA 5 . Abnormal nodes lungs. Laesies in liver, too small to be identified so cleared for HIPEC
12/15 Hipec 3 tiny -yet alive- mets removed (Douglas pouch). Unexpected LAMN tumor appendix resected. Colostomy, 2nd resc. of sigmoid 0/19.
01/16 CapOx 3x, 1x Mono Cap
05/16 CT: NED CEA 2
08/16 CEA 1
11/16 CT: NED , CEA 1
06/18 NED, CEA <1, CA19-9 7

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Incidental LAMN tumour

Postby Deb m » Tue Mar 08, 2016 1:13 pm

Thar's great news!

deb m


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