Please help- signet ring cell & two primary cancers! Rare & scared

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TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby TXLiz » Tue Jun 20, 2017 7:28 am

I cannot imagine how painful it must be to be pregnant, with another little one by your side, and experiencing the terror and heartbreak of cancer in your husband.

I didn't have medical advice, but try to take care of yourself and eat and get rest. I am sure it feels impossible right now to do those things, plus care for your little child.

I sincerely hope that you have a supportive family that can help you at this time. You've got to be overwhelmed on every front.

My best wishes and hopes to you and your husband as you fight this disease.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby fumaros » Tue Jun 20, 2017 7:46 am

I don't feel i can put anymore onto my husband than i already have! He is the one with the death sentence and yet i am the one who is falling apart. I don't know how to control it, it just seems to be consuming me and sapping me of any small amount of energy i have left.


It's obvious that you are hurting a lot. Cancer affects even the caregivers. The worry can consume you, and it will not help anyone in your family. Your husband has a chance as long as he is breathing. I have talked to a therapist/social worker - find one with experience working with cancer patients, believe me talking to one helps. You should take care of your mental well being so that you can be strong for your husband and your children.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby Swirdfish » Tue Jun 20, 2017 9:12 pm

What a horrible time for both you and your husband, especially with a baby on the way, and him diagnosed with two primary's. The biggest thing you can do is stay away from the internet, I know its not that easy too as you want answers, and just take it one day at a time. Keep in regular contact with you health professionals and ask as many questions as you need. Even write notes, as I know for me and my partner we often forgot due to information overload.

Not an easy path and often my wife blamed me for getting sick, and even got to a point where she hated me for it. This is the time you both need to work together, and be aware of your stress levels etc for the baby.

Mine was mucinous but im not sure if it was CRC, but after awhile i stopped reading about it and concentrated more on my health and wellbeing, as well as focusing on my treatment. Usually the internet didn't provide much answers besides this forum, so you are continually looking and reading the worst.

Family became more important to me. Work came second.

See a therapist if you both need one. I have one now, and he is awesome. Its good to vent to them and let it all go, sometimes it will make the world lift off your shoulders. Get sleep, limit coffee and sugar, and stimulate the brain with other activities while you can, instead of thoughts on cancer.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

ckumar
Posts: 3
Joined: Sun Aug 20, 2017 1:31 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby ckumar » Sun Aug 20, 2017 2:02 am

Hello Sarah,

Thanks for sharing your experiences. It seems by now you may have a newborn baby girl to look after. I do hope your husband is tolerating things well. Your thread has helped me. My husband too has been diagnosed with Signet Ring Cell colon cancer. He also has Lynch Syndrome which is a genetic mutation of sorts. Plus he's diabetic, has sickle cell trait, and a blood clot in his groin area. He just went through surgery July 25th to remove the tumor in his colon. He's recovering quite well. He got the port and begins chemo on Sept. 14th.

His doctor isn't very forth-coming with information. Like you, I made the mistake of researching every detail of his path report online and found nothing but terrible information. I asked his oncologist of the significance and he wouldn't elaborate. He asked me what information did I find? He uses a lot of metaphors and I don't really like that. I prefer the 'give it to be straight,' method. My husband on the other hand is quite fond of him. I've tried to talk him into getting second opinions but no such luck so far.

Please know that how you are feeling is completely normal. We have a 3 year old son and like you, I'm very co-dependent on my husband for strength and security. Now that he needs me for strength, I'm terrified of failing him. I can't tell you the number of times I cry in my car or other places where he won't see. Something I've done that helps, asked my doctor for anxiety medication for those tough moments. I hate to say that I am weak but there are times I just can't muster the energy to be positive day in and day out. Sometimes I just worry. I worry about everything you do. Our future, our children, what he's going through, how unfair it is, do I savor the time we have and live as if it will be short or do I go on as if nothing is wrong and make plans for years down the road? As you can see, we are planners. We both like structure and this diagnosis has turned our worlds completely upside down.

Everyone tells me to do one day at a time. That advice I am passing on to you. One day. That's all we can do for now. I'll follow your story and will post ours as well. **hugs** You are not fighting alone. (Yes, we as wives have to fight just the same as our husbands).

All the best,

Carissa

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby veckon » Sun Aug 20, 2017 6:45 am

ckumar wrote:Hello Sarah,

Thanks for sharing your experiences. It seems by now you may have a newborn baby girl to look after. I do hope your husband is tolerating things well. Your thread has helped me. My husband too has been diagnosed with Signet Ring Cell colon cancer. He also has Lynch Syndrome which is a genetic mutation of sorts. Plus he's diabetic, has sickle cell trait, and a blood clot in his groin area. He just went through surgery July 25th to remove the tumor in his colon. He's recovering quite well. He got the port and begins chemo on Sept. 14th.

His doctor isn't very forth-coming with information. Like you, I made the mistake of researching every detail of his path report online and found nothing but terrible information. I asked his oncologist of the significance and he wouldn't elaborate. He asked me what information did I find? He uses a lot of metaphors and I don't really like that. I prefer the 'give it to be straight,' method. My husband on the other hand is quite fond of him. I've tried to talk him into getting second opinions but no such luck so far.

Please know that how you are feeling is completely normal. We have a 3 year old son and like you, I'm very co-dependent on my husband for strength and security. Now that he needs me for strength, I'm terrified of failing him. I can't tell you the number of times I cry in my car or other places where he won't see. Something I've done that helps, asked my doctor for anxiety medication for those tough moments. I hate to say that I am weak but there are times I just can't muster the energy to be positive day in and day out. Sometimes I just worry. I worry about everything you do. Our future, our children, what he's going through, how unfair it is, do I savor the time we have and live as if it will be short or do I go on as if nothing is wrong and make plans for years down the road? As you can see, we are planners. We both like structure and this diagnosis has turned our worlds completely upside down.

Everyone tells me to do one day at a time. That advice I am passing on to you. One day. That's all we can do for now. I'll follow your story and will post ours as well. **hugs** You are not fighting alone. (Yes, we as wives have to fight just the same as our husbands).

All the best,

Carissa


I also have Lynch. Have you heard about keytruda (Pembrolizumab)? It was FDA approved a few months ago. Seeing incredible results so far.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

ckumar
Posts: 3
Joined: Sun Aug 20, 2017 1:31 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby ckumar » Thu Aug 31, 2017 4:02 pm

Yes, we've heard of Keytrude. That is our plan B.
Husband age 37 Dx 7.28.2017
Colon Cancer - Signet Ring Cell Carcinoma
Lynch Syndrome - Positive
Sx 7.25.2017 - All Margins Clear
Stage 3C: T4a-N2b
High Grade
Sickle Cell Trait
Blood Clot - Iliac Vein
**Blood Thinner**
Type 2 Diabetic
Starting Folfox 9.14.2017
Boy age 3 & Girl age 12


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