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audra
@ajnaudra

Posts: 10
Joined: Jan 13, 2018

Carcinoid Cancer and working

Posted by @ajnaudra, Tue, Feb 13 11:19am

Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had an immediate CT scan which showed a large mass in my small intestine. Two weeks later over a foot of bowel, part of the colon, and left ovary removed along with lymph nodes and tissue. Three months later I needed a colonoscopy then three months after that a full hysterectomy. CT scans and MRI’s prove I still have tumors in tissue and tiny “spots” in my liver too small to grade as tumors at this time. I am on Sandostatin every 28 days and seem to tolerate it well. My booty hurts for about 2 weeks but is tolerable. I am usually tired for a couple of days and do suffer from extreme diarrhea on and off. I live on the tip of the thumb in Michigan and don’t know anyone to speak with regarding this cancer. I applied for SS benefits and was turned down, not eligible, not old enough, not enough work credit, blah blah blah. The only other thing I can think of is to go back to work to help with our finacial situation before we have to file bankruptcy (which I do not want to do). I also suffer from Fibromyalgia and have not worked outside the home for about 7 years. Any insite would be appreciated!

REPLY

@ajnaudra Hello Audra,

I see that this is your first post on Connect, welcome!

I am a volunteer mentor for Connect and I have had 3 surgeries for NETs in the duodenal bulb. While I have not had the extensive surgeries that you have experienced, I can understand the problem of trying to work when you have chronic illness and all the symptoms that go with carcinoid syndrome. I, too, am a resident of Michigan, Oakland County, so we are almost neighbors!

What hospital are you being seen at? Who is your doctor? Also, have you contacted Michigan Vocational Rehabilitation? They can sometimes help train disabled people for jobs that are better suited for their health needs. I’m not sure how you get connected with them, but give them a call.

Also, regarding disability benefits: have you consulted an attorney or a advocate agency to help you get your social security disability benefits? They can be quite helpful (and persistent) at times.

I look forward to your posting again.

Teresa

I forgot to mention there are no support groups here because it’s somewhat secluded (like the edge of the earth). Although my husband is extremely supportive, I feel other people who share this cancer would be helpful. I was told after the surgery I could live up to 10 years and perhaps 5 after it hits the liver. I’m not sure what to think about that info……it’s like I have a ticking timebomb looming over my head ready to explode. I am very confused and truly look forward to opinions and experiences anyone has.

@hopeful33250

@ajnaudra Hello Audra,

I see that this is your first post on Connect, welcome!

I am a volunteer mentor for Connect and I have had 3 surgeries for NETs in the duodenal bulb. While I have not had the extensive surgeries that you have experienced, I can understand the problem of trying to work when you have chronic illness and all the symptoms that go with carcinoid syndrome. I, too, am a resident of Michigan, Oakland County, so we are almost neighbors!

What hospital are you being seen at? Who is your doctor? Also, have you contacted Michigan Vocational Rehabilitation? They can sometimes help train disabled people for jobs that are better suited for their health needs. I’m not sure how you get connected with them, but give them a call.

Also, regarding disability benefits: have you consulted an attorney or a advocate agency to help you get your social security disability benefits? They can be quite helpful (and persistent) at times.

I look forward to your posting again.

Teresa

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Thank you Teresa. I live in Port Austin and travel 2 hours to Saginaw to the Covenant Cancer center. I see Dr Binu Malhotra every 6 months but receive Sandostatin every 28 days with bloodwork. I used to travel 3 hours to Ann Arbor but it was too far and really tired me out not to mention the shot alone was $20,000 per month and now it’s just over $500. I don’t understand that but whatever.

I have an Associates in Humanities and Social Science and another degree in Social Work. I suffer from Fibro so have not worked in quite some time. I don’t know if working would be harmful and make the tumors grow lessening the life I have left. That’s why I am seeking anyone’s insite.

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

@mollie59

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

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@mollie59 Hello Mollie:

Thanks for the great suggestion regarding the Lidocaine lotion prior to the injection!

Teresa

@ajnaudra

I forgot to mention there are no support groups here because it’s somewhat secluded (like the edge of the earth). Although my husband is extremely supportive, I feel other people who share this cancer would be helpful. I was told after the surgery I could live up to 10 years and perhaps 5 after it hits the liver. I’m not sure what to think about that info……it’s like I have a ticking timebomb looming over my head ready to explode. I am very confused and truly look forward to opinions and experiences anyone has.

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@ajnaudra There is one support group in Michigan – not close by – but in Grand Rapids. Have you talked with Dave Vickery, who is the support group leader there? He has an abundance of materials that he will send you with great information about carcinoid issues. The support group only meets once a year, however, you can get on their email list and connect with others online.

Here is the information on how to contact Dave, you will enjoy meeting him online or by phone. He has had METs to the liver much longer than 15 years. Here is his contact info, Michigan Carcinoid Group (MCG)
The main theme of this support group is “Sharing Information, Caring for Each Other.” MCG is a casual friendly group; all persons interested in carcinoid or NETs are welcomed. Specific suggestions for agenda items are encouraged.
Contact: Dave Vickery; dave.vickery2008@gmail.com
Tel: 616-450-0842 (cell), 616-447-8550 (home)

I would also like to invite @tresjur into this conversation as she has had METs to the liver for a number of years as well and she also lives in Michigan.

Teresa

@ajnaudra

I forgot to mention there are no support groups here because it’s somewhat secluded (like the edge of the earth). Although my husband is extremely supportive, I feel other people who share this cancer would be helpful. I was told after the surgery I could live up to 10 years and perhaps 5 after it hits the liver. I’m not sure what to think about that info……it’s like I have a ticking timebomb looming over my head ready to explode. I am very confused and truly look forward to opinions and experiences anyone has.

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Again, thank you so much for this info Teresa. I’m feeling a bit better knowing I can speak with others afflicted with this disease. Hugs to you!

@mollie59

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

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Thank you Mollie. I was not aware they could issue a topical anesthetic for this. I get another injection tomorrow so I will ask. Hugs and prayers for you. Please tell me more about your road you have traveled with this disease.

Hello Audra,

Let me introduce myself….I am Mary, and was diagnosed with Carcinoid Syndrome (with liver mets) in late 2008. I, too, live in Michigan in a sub near Detroit and I’m entering my 10th year of living with this disease. To date, I have had no surgeries and my only treatment is the Sandostation injection every 28 days. Like you, I occasionally experience pain at the injection site, but when it happens it only lasts 2-3 days. I was told a tylenol and cold press at the site would help, but so far I’ve just tolerate the pain until it passes.

After diagnosis, I felt a loss and had no idea where to turn for additional information. Because Carcinoid is a rare disease, I also felt alone and until recently never met another person living with it. Over the years I’ve seen more available resources and information on neuroendocrine tumors. Support groups have been very beneficial in supplying information and feeling of camaraderie. Michigan’s Carcinoid Support is headed by Dave Vickery in Grand Rapids. Mr. Vickery has been living with Carcinoid for 20 or more years has is a great source for information and what is new on the horizon. If you haven’t done so, please contact him and get on his mailing list – dave.vickery2008@gmail.com.

The Sandostatin has help tremendously with my bouts of diarrhea, but I ocassionally have episodes of flushing. I just has the Sandostation increased and since then I have not had another flushing episode. Last year a new drug was approved, Xermelo, for people who still have diarrhea issues even with the sandostatin injections. You may want to look into this and discuss it with your doctor.

Don’t give up on the SSA benefits. I understand it is really difficult at this time for anyone to get approved but please keep at it. Stress and worry doesn’t help with this disease but from my own experience, I know, it is hard to to worry and stress. I deal with cancer and heart disease, among other things, at at times it is overwhelming.

Stay hopeful and prayerful…..stay in touch and do your due diligence in finding out all you can about this journey you are now traveling.

Blessings,
Mary

@ajnaudra

I forgot to mention there are no support groups here because it’s somewhat secluded (like the edge of the earth). Although my husband is extremely supportive, I feel other people who share this cancer would be helpful. I was told after the surgery I could live up to 10 years and perhaps 5 after it hits the liver. I’m not sure what to think about that info……it’s like I have a ticking timebomb looming over my head ready to explode. I am very confused and truly look forward to opinions and experiences anyone has.

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@ajnaudra Audra: Hugs right back to you! Teresa

@tresjur

Hello Audra,

Let me introduce myself….I am Mary, and was diagnosed with Carcinoid Syndrome (with liver mets) in late 2008. I, too, live in Michigan in a sub near Detroit and I’m entering my 10th year of living with this disease. To date, I have had no surgeries and my only treatment is the Sandostation injection every 28 days. Like you, I occasionally experience pain at the injection site, but when it happens it only lasts 2-3 days. I was told a tylenol and cold press at the site would help, but so far I’ve just tolerate the pain until it passes.

After diagnosis, I felt a loss and had no idea where to turn for additional information. Because Carcinoid is a rare disease, I also felt alone and until recently never met another person living with it. Over the years I’ve seen more available resources and information on neuroendocrine tumors. Support groups have been very beneficial in supplying information and feeling of camaraderie. Michigan’s Carcinoid Support is headed by Dave Vickery in Grand Rapids. Mr. Vickery has been living with Carcinoid for 20 or more years has is a great source for information and what is new on the horizon. If you haven’t done so, please contact him and get on his mailing list – dave.vickery2008@gmail.com.

The Sandostatin has help tremendously with my bouts of diarrhea, but I ocassionally have episodes of flushing. I just has the Sandostation increased and since then I have not had another flushing episode. Last year a new drug was approved, Xermelo, for people who still have diarrhea issues even with the sandostatin injections. You may want to look into this and discuss it with your doctor.

Don’t give up on the SSA benefits. I understand it is really difficult at this time for anyone to get approved but please keep at it. Stress and worry doesn’t help with this disease but from my own experience, I know, it is hard to to worry and stress. I deal with cancer and heart disease, among other things, at at times it is overwhelming.

Stay hopeful and prayerful…..stay in touch and do your due diligence in finding out all you can about this journey you are now traveling.

Blessings,
Mary

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Mary,
Thank you so much for reaching out and providing this info. I just emailed Dave today and hope to touch base with him as well. I have read tons of info via online sites. I feel most of it is outdated as it does seem people afflicted with this disease are living longer lives. Wonderful to hear! Please feel free to reach out any time and chat with me. I just looked up Xermelo and they even have carcinoid friendly recipes! Yaaaay!

@mollie59

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

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Hi Mollie,
I asked my Dr yesterday and she wrote a script maybe an hour after she received the request. I will use it today before the injection and let you know how it works out!

My name is Mariana. I live in Dallas and was discovered during my first colonoscopy to have a rectal carcinoid in 2000 and a recurrence in 2010. I do not have carcinoid syndrome but I did want to encourage you to reapply for SSI disability. Friends who do receive it have told me you always are denied the first time and maybe subsequent times. Unless you can find a low-cost advocate atty you will have to do the paperwork yourself. You just keep writing letters and re-applying. Don’t take no for an answer. I know your feelings of isolation and fear of the unknown. A support group like this is very helpful. Thank you to the mentors and people who replied to Audra.

@mgreene Hello Mariana,

I see this is your first post, welcome to our community of NET survivors! I am so happy that you posted to @ajnaudra. I am Teresa and I am a volunteer mentor with Connect and have also had 3 carcinoid tumors in the duodenal bulb.

I agree, that you do have to be persistent in order to get benefits for SSI disability and sometimes you need to have some legal support as well.

I'm also glad that you shared something about your own history with carcinoids. If you are comfortable sharing more, I would be interested in knowing if you had symptoms prior to the discovery of the first carcinoid in 2000 or if just showed up when you had a routine colonoscopy? My three carcinoid tumors gave me no symptoms, they were just discovered in a routine Upper Endoscopy. I feel fortunate that they were discovered early and while they were small.

Since you do not have any carcinoid syndrome symptoms you are probably not taking any follow up treatment (monthly injections)?

Once again, welcome to Connect, I look forward to your sharing your story and your encouraging words.

Teresa

@mgreene

My name is Mariana. I live in Dallas and was discovered during my first colonoscopy to have a rectal carcinoid in 2000 and a recurrence in 2010. I do not have carcinoid syndrome but I did want to encourage you to reapply for SSI disability. Friends who do receive it have told me you always are denied the first time and maybe subsequent times. Unless you can find a low-cost advocate atty you will have to do the paperwork yourself. You just keep writing letters and re-applying. Don’t take no for an answer. I know your feelings of isolation and fear of the unknown. A support group like this is very helpful. Thank you to the mentors and people who replied to Audra.

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Thanks Mariana,
Nice to meet you. Would be interested in hearing more!

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