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Husband just diagnosed update****

Ebarrera
Posts: 19
Joined: May 2019

Update : 

We saw the oncologist. My husband is at stage 3. They are starting chemo and radiation for 6 weeks. Hell rest for 4 , have an MRI and if it looks good surgery will follow. And then another round of chemo for 4 to 6months. The dr. Said she could write a letter to get him on disability bc his job is very strenuous.  She said the radiation willl make it very painful and uncomfortable him to work. He owns a pepperidge farm route. 

Has anyone gotten on disability with colon cancer? I know nothing about it. 

I am very concerned about the medical Bill's that are coming... I'm thinking maybe hed qualify for Medicaid if he got on disability? 

 

Hi my husband was just diagnosed with coloncancer. He is 47 and we have been married for a little over a year. We are seeing the oncologist next week. The waiting is torture. He has lost weight, and had chronic diarrhea  with bleeding.  I am wondering do the symptoms start at stage 1? I am in total shock that this is even happening to us. We have a 2 month old as well as 4 other kids between the 2 of us. I feel like I'm living in a nightmare and this is all I can think about now. I am trying to be strong for him,  but I am so depressed.  I keep thinking about our poor daughter growing up without a father.  I know i have to be positive,  but its such a scary disease.  We did see a colorectal surgeon and he seemed very hopeful. However at that point we hadnt done a MRI or ct yet so he had only seen the colonoscopy pictures. Any advice?

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I don't know about the staging and symptoms, I'm sorry. All I can say is I'm sorry you two are dealing with this and it is possible to have a number of years, possibly even more than you can imagine, while living with this. I have stage 4 and have been stage 4 for several years and they don't think I'm going anywhere soon. I'll never beat it but I have chemo twice a year and it keeps it at bay. So its basicly a chronic disease for me that I can live with. Its possible to go from stage 4 to what os known as NED- no evidence of disease- as well. It seems like everyone is different with this. Different responses to treatments, some are more aggressive than others, differing side effects, what works great for one person does nothing for another, that kind of thing. So they really can't say how things will go. I know what you're looking for is reassurance but it isn't possible with this.

Take care,

Jan 

Ebarrera
Posts: 19
Joined: May 2019

Did you have surgery? Were you tired before the chemo? My husband hasnt had any treatment yet as we are waiting on scans. Insurance is dragging their feet. He is always tired... I just wonder if that is normal and does it get better with surgery or chemo?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I can't say. I'd bought a business less than a year before and was so busy with that that I can't say for sure. I was tired but was it from the cancer? I don't know. I've been asked a few times if I wasn't tired. The everything seemed like such a whirlwind. The port, the chemo and radiation, then the surgery. It all seemd very quick. I also had to sell the business and had an employee that wanted to buy it and chose to try to destroy it when I first refused. She'd asked about 4 days after my diagnosis, a little soon. I'd told her I wasn't ready tomake that decision yet and she quit and went on Facebook and was lying about me and the business. It was pretty horrible. And with then trying to sell it I was just too busy.

Sorry, that's not much of an answer.

Take care,

Jan 

Djspareme's picture
Djspareme
Posts: 18
Joined: Mar 2019

Fatigue is very common.  Let him rest when tired.  

SandiaBuddy's picture
SandiaBuddy
Posts: 841
Joined: Apr 2017

Things can be overwhelming, especially when you have no idea of the scope of the disease and the challenges of the future.  All I can say is that you have to take one step at a time.  Even with scopes and scans, you will unlikely know the extent of the disease until surgery.  At that point, some walk away with no further treatment, while others get bad news and face chemotherapy and an uncertain future.  Sorry you are in this circumstance.

Bellesouth
Posts: 11
Joined: Feb 2017

Also your husband has youth on his side. And depending whether he has other underlying conditions or in good health otherwise is also a determining factor. But yes, the waiting is maddening. Then comes the uncertainty because every case is different. Just buckle up and hang on for the ride. And best wishes to you & your family... 

Ebarrera
Posts: 19
Joined: May 2019

Thank you. Yes thank God he is in good health otherwise. .I pray that this will help his situation. 

Twinzma
Posts: 204
Joined: Jan 2018

I am so sorry that you are now in this group. It's sucks and it's just not fair. We found out Nov 2017 Thanksgiving day. The very first words out of my husbands mouth were "Oh my God, I am going to die". Seeing him in that hospital bed, hearing those words are going to haunt me for the rest of my life. My husband is stage 4, with 30 mets to his liver. There are days I do think things will be okay, but lately he has had a few setbacks which has been a slap in the face. In a strange way, most of the time I try embrace the diagnosis as a wake up call, we are kinder to one another, we cherish each other like we never had before....after all he could have been killed in a wreck driving to work, so we no longer take another moment for granted. The realistic side of me knows that with the amount of a tumor load to his liver....that the miraculous remission probably won't happen but for now as long as he continues with treatment each day is a step closer to a medical break through and that's what keeps me able to function. You are still early in this, you don't know the staging yet and hopefully it is not advanced. My husband never showed the symptoms it was a shock. I had just came home from the hospital myself with pneumonia he started a fever and had some pain when he was taking a deep breath so we went to the ER thinking he needed antibiotics. In a few hours our lives were changed. The doctor came in with that look of doom and just through it out there, colon cancer with over 20 tumors on the liver and he walked out that was the last we saw of him. He was admitted there and then for further testing. What was supposed to be a normal Thanksgiving holiday, turned into the worst roller coaster ride anyone can imagine. 

Whatever stage it does come back at, there is always hope you have to hold onto that and believe that. You too have kids depending on you, so you have to put that smile on your face and still remain that upbeat cheerful Mommy. The 2 month old is way too young, thank God to know what is going on. The older kids. Notify their schools and have them on the look out for any changes in their personalities and work. Our kids are handling it well, but at first they did get into a couple of fights and grades started to slip. The fights were because of cruel heartless bullies that said to them "Your Dad's going to die and you are going to be homeless" Some kids are just rotten to the core! The guidance counselors will go above and beyond to talk to them and they may open up to them more than to you at first. Be as honest as you feel that they can handle but do know they can and will handle it much better than you will give them credit for. You may not need to tell them everything, but once the staging is in and treatment begins, you have to start telling them something. God willing it's early, God willing surgery will get it out and chemo can be avoided. But even with the best case scenario the older kids are going to know something is up. With us, we have been 100% upfront with everything, staging and all. They are 13 though and hard to put anything past. I feel as though it's better to have it out in the open than one day having them hate me because they were not prepared for what lies ahead.  

You husband is so young, as much as your feel like saying it is horrible that he is so young....Its actually a good thing. He's got a lot of strength and stamina in him and will likely tolerate treatment much better now than say 10 or 20 years from now. As far as treatments not knowing what they will be yet let me tell you each patient is very different some will get horribly sick from chemo others won't. So you can cross that bridge when you come to it. In the meantime you have lots of questions and we are here to help you through. I can promise you that the internet as helpful as it is will also drive you even further mad. STAY away from reading the statistics! The statistics are so inaccurate and misleading and will scare the crap out of you! If you have read them, or will read them, know that they are out of date, did not exclude patients with other illnesses and cause of deaths. So much has changed in the years since that was published such as the line of targeted therapies and the gene testing for more effecive cocktails to be put on. 

Honey once again, I am so sorry that you are here. I wish that there was something that I could do or say that would set your mind at ease. Unfortuntley there are no words and no actions that will do that. So my best possible advice to you is to hold onto your faith, love him and appreciate him even more. This is going to be an emotional roller coaster, ups and downs twists and turns and you need to brace for that. You have it in you though to still be that great mom the great wife and that awesome caretaker.....though right now you probably don't feel that way, since it's so new to you. Remember to take care of you too. Keep up with your own doctor appointments, keep up with your eating healthy too and get plenty of rest. Take time to step aside and clear your mind and don't feel guilty about it. You will be good to no one if you are not good to yourself! Hang in there!!! Hugs!!!  

Annabelle41415's picture
Annabelle41415
Posts: 6123
Joined: Feb 2009

Only tests and staging can really determine how your oncologist wants to approach this.  I'm sorry that you have to be here and you are right, it is very scary.  There are times when the colonoscopy can reveal whether it's cancer or not but not whether it has spread to other areas and other lymp nodes.  Wait to see what the tests show and then go from there.  Sometimes it can be handled with some surgery and possible follow ups.  It's hard not to fret about this but we are an excellent group that can help you and your husband get through this.  Wishing him the best of luck.

Kim

Woodytele
Posts: 163
Joined: Apr 2017

I am 46 years old, and was diagnosed in November 2016, Stage 4, Mets all over the place, liver, lungs etc.  It is a nightmare, just try to stay positive, and take things as they come.  

Ebarrera
Posts: 19
Joined: May 2019

Did you have symptoms? Have you had surgery? Chemo?

Woodytele
Posts: 163
Joined: Apr 2017

Hi ,

i did have symptoms, constipation mainly.

i had surgery on the cloon to remove the tumor.  Then chemo started 6 weeks after. 

Ive been on chemo for about 2 years, probably 40 infusions total.  On a clinical trial now. 

 

If you need any info just let me know. 

Worriedchild
Posts: 56
Joined: Dec 2017

Hello Woodytele how are you doing? 

Djspareme's picture
Djspareme
Posts: 18
Joined: Mar 2019

I was diagnosed in March 2017.  Stage 3c.  No symptoms.  While up in a Saturday with abdominal pain and a fever.  Thought it was appendicitis.  Monday morning im having surgery ro remove the mass.  Extensive chemo, more surgery and more chemo.  Did have a brief remission.  Im currently being treated with a chemo pill, Xeloda.  More scams in June.  Im able to do most of what i did before.  I walk every day and that helps.  Hope your husband's gets good news.

 

Pamcakes
Posts: 86
Joined: Jan 2018

My husband was diagnosed stage 4 july 2017 at the age of 37. His was found during a colonoscopy and emergency surgery was preformed less than 24 hours after the baseball sized tumor was found. He had one met on the liver. looking back we saw the symptoms, fatigue, weight loss, waking up very pale, diarrhea etc. at the time he always had a reason to justify the symptomS- working too much,

the chicken wings etc. 54 chemos, 30 radiation treatments & 5 surgeries later (3 related to cancer) he is still here and at the moment thriving. He recently had an APR and finally all cancer was said to be removed, he has scans next month to determine if all is still clear. It is an Up and down roller coaster ride. Until they do staging you will not know.we were told stage 2 to start and it ended up being stage 4 a  few days later. I would encourage a second opinion if you are not at a major cancer center. Rich was first told ”chemo for life, howeverl long that may be”. many prayers to your family. Take care of yourself. It’s easy to neglect yourself during this time, but try not to. 

Ebarrera
Posts: 19
Joined: May 2019

It went from stage 2 to 4 in a matter of days? Do you think it was incorrectly staged to begin with? All those rounds of chemo and radiation.. what is that like for your family. My husbands surgeon said that the chemo he would get doesnt make you tired and loss your hair, like you see on tv.....  but I dont know what to expect. 

Pamcakes
Posts: 86
Joined: Jan 2018

Richard had the emergency surgery to remove the tumor in the sigmoid coloN, this was an emergency surgery. Afterwards he had CT Scans on the liver and lungs.a small spot was in the liver. They said it was liocancer. The staging was explained to be somewhat of an estimate based on the tumor, after surgery they were albe to

confirm staging. I think this happens a lot. The surgeon was upfront that it may change. The chemo was hard on Richard after a few cycles. He was on Folfox, 5 FU and Avastin the first 12 cycles. He had a lot of the side effects and towards the end of the first 12 cycles he was drained. Had neuropathy, cold sensation, vomiting, fatiguE. But he made it through! You will get so much wonderful education and advice on how to help deal with the symptoms. We were never able to have children so it’s just us. It was very hard on me at times, no one was really around that understood what I was going through. I endured a lot of depression and have developed major anxiety. again while it was hard, we’ve made it through. I can’t stress the importance of getting a support system and taking care of yourself. This forum kept me sane- mostly sane! My richard handles all of this like a true super hero. He would get down, but never for long!!! He worked as much as he could. I hide any worry I had from him and made sure I kept our home & life as upbeat and as normal as we could! You will get through this!!!

hmalik
Posts: 5
Joined: Mar 2019

Hi,

I know you're going through a tough time but I wanted to just reach out and let you know my husband's story.

 On February 27th of this year, we took my husband to the hospital bc he had severe constipation. He is 31. We found out he had a bowel obstruction due to a tumor through a CT scan. He had surgery the next day. The tumor was 7 cm long. He had to also have an ileostomy bag which is temporary for now. 

The pathology report came back about 6 days after his surgery and it was confirmed to be cancer. It was staged at 3c but we were told it's a "dangerous" 3c because of the aggressive nature of the cancer as well as because he had 11 of 21 lymph nodes positive for cancer. They did a chest CT scan in the hospital to make sure there weren't any mets to his lungs and thankfully there weren't.

Fast forward to now, he's had 5 sessions of Folfox chemo. He's responded well to the treatment. He hasn't lost his hair and still has an ok appetite. There's a lot that he can't eat because of the ileostomy bag, which is also a huge life change. His blood tests have been good, a few areas related to liver function where the values could be lower but nothing that his oncologist is too concerned about. He had a scan a few days ago so we're hoping it comes back clear.

He will have 7 more sessions and then we're hoping he'll be NED (no evidence of disease). Also, he had a second surgery (outpatient) before his chemo to install a mediport just below his left shoulder. That's where they give him the chemo through.

He has chemo every 2 weeks on a Wednesday. The 5fu is attached to his port from Wednesday to Friday through a little ball that administers the medicine. It's small enough that he puts it in his pocket and a nurse comes by and removes it on Friday. Now from Wednesday through Sunday, he's tired. He sleeps most of the day and sometimes gets a fever, but otherwise he's fine, just tired. Monday, he's an amazing ball of energy of again and the next week goes by smoothly.

My point is, we're coping with this best as we can, one day at a time. It took me a while to get to this point. On an unrelated note, during this whole time, I also had to have surgery for thyroid cancer (no chemo), which added to our stress this whole time. We're lucky that we have an amazing support system in our family. We don't have kids and may never have them (chemo affects sperm), but we've accepted that. But we're getting through this and you and your husband will too. I pray everything goes well for your husband. If you have any additional questions, please feel free to reach out. Thanks.

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

I didn’t see anyone comment on whether going on disability is an option with colon cancer. I will say that in my experience I was given assistance applying for ssdi as soon as my short term disability ended and long term kicked in. My employer had this service called Allsup who basically got the ball rolling and assisted with completing forms and accessing the necessary medical records to submit to ssdi. This can be done on your own but I was fortunate to have them help. It was of course so the government would be at least partially responsible for my disability payments and it lessens the burden in the insurance carrier. Anyhow I believe it kicks in if approved at 6 months from the time you were disabled. This is also the amount of time it took to be given a decision In my case. Apparently I was fortunate or unfortunate at being approved quickly and without needing any additional appeals. It seems some cases can take a long time to be approved and I was told point blank most claims are denied then appealed and hopefully approved and is paid retroactively to the 6 months after disability. 

Again I’ll say I had no problems applying for it and being approved and that was no doubt due to my condition and the job I held. If I am able to go back to work after treatment it can be put on hold and reactivated if god forbid I’d need it to be.  

The advantage of going on ssdi ( besides the income it provides)is it stops the clock on your weekly earnings as far as social security. For instance it means that when calculating social security benefits it will not reduce your average pay because the weeks You aren’t getting paid by employer are not included in the average whereas if that clock doesn’t stop it can reduce your average. I hope that makes sense. 

I believe that after 2 years I could in theory go on Medicaid ( or Medicare-not exactly versed in that option as of yet) which is something that could be very important. I’m a year away from that anyway but when it gets closer I’ll hopefully figure out the best option for me. Anyhow the answer is yes there are people on ssdi disability for colon cancer or at least there’s one of us. :) 

Hoping for the best for you and your husband.

Ebarrera
Posts: 19
Joined: May 2019

Thank you for the info. So my husband owns a pepperridge farm route which is really hard strenuous work. The dr told him he would have a hard time working and she would write the letter. We are on my insurance until August when I plan to stay home with our newborn. I am hoping he can get any help with the payments for treatment. I will definately look into allsup. 

Annabelle41415's picture
Annabelle41415
Posts: 6123
Joined: Feb 2009

If he is stage 4 I'm thinking it's automatic for disability but I'd check the government website as there are some restrictions.  Also if you have a Social Security office near you, go in an ask them this question.  But I'd try the suggestion above with that company.  Also, don't ever be disappointed if they deny him the first time as they usually do, that's why it's good to get a lawyer or a company to help you as they've been through this before.  Wishing him luck.

Kim

Princey
Posts: 17
Joined: Sep 2018

Good morning.  When you say he has a Peppridge Farm route, is he a delivery/truck driver?  My husband is a local truck driver who also has stage 3.  He has completed chemo, and radiation.  He will have his surgery on 6/13.  So sounds like my hubby has same schedule as your husband.  Hubby has worked the entire time, through all treatments.  He has never once taken time off for not feeling well.  He is also very stubborn!  Of course everyone deals with this differently and has different reactions.  He has been lucky so far.  Just want you to know that it is possible to keep working a strenuous job thru all treatment.  I hope all goes well for him.  

Ebarrera
Posts: 19
Joined: May 2019

Yes he drives his own truck with a trailer attached. my husband too is very stubborn. His oncologist said it would really be up to him and how much he can tolerate. My husbands cancer is in the sigmoid colon. Where was yours? 

Princey
Posts: 17
Joined: Sep 2018

my husband's is rectal.  and he drives trailers too.  I felt sure that at least after radiation he wouldn't be able to continue, but, I was wrongSmile.  It hasn't been easy, but he's been there day in and day out.  He works for a very small family owned company.  When he has had to miss time for treatments, he doesn't get paid, but at least as of now, they've kept him on.  We have been worried that they would let him go.  Luckily he has very good insurance through them, but I added him onto mine at the beginning of the year just in case they were to terminate him.  We'll see how things go after surgery.  Don't know if he'll be able to continue the day in and day out of such a physical job.  But I think if he could do it in the midst of all that treatment that he'll be ok.  

Ebarrera
Posts: 19
Joined: May 2019

Wow that is amazing. I think my husband will be so happy to hear this. Do you mind if I ask a personal question and you dont have to answer if your not comfortable. Has he had any ED problems after all the treatments and surgery? 

Princey
Posts: 17
Joined: Sep 2018

Not so much.  Things are a little different?  and of course the desire for sex is pretty low at this point in treatment :)  I guess we'll really see after surgery.  

annie4145
Posts: 92
Joined: Jul 2018

I don't know what state you are in, but if they do let him go, check with an attorney.... Or if they start to let him go, have him ask for leave as a reasonable accomodation for his disability (cancer).  It might help.  If he has a reasonable expectation of getting back to work after treatment, they should probably hold his job open for him. (But you would have to check all the details out and research this or talk with someone...)

Princey
Posts: 17
Joined: Sep 2018

We're in Maryland.  We're hoping that they hold his job.  They have been very good about accomodating all his time off so far for treatments.  The issue is that his company is very small, less than 25 people so I know that FMLA doesn't apply(for example).  And I'm pretty sure he doesn't have job protection.  One good thing is that he does have his CDL and could find a new job in a minute.  He would just have to start all over in a new company.

Butt's picture
Butt
Posts: 279
Joined: May 2018

SSD is not automatic even with stage 4 colon cancer. Private disability insurances are not automatic either with stage4 Colon cancer. I am not sure why he needs to go into SSD when with stage 3 colon cancer quite a few people are clearly cured and done with chemo after a surgery and 6 month chemo. Butt.

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

 

Hi 

In my case the first thing to do was file for FMLA. Your husbands HR dept should be able to lead him the way to applying. This is 12 weeks time off but unpaid. You could choose to apply for intermittent FMLA to cover days he needs off for treatment and/or after if he continues to work the other days when he may feel better. The purpose is to protect his employment throughout that 12 weeks,either taken as individual days or if taken all at once In my case as soon as I left to have surgery FMLA kicked in. I also had short term disability through my employer that paid me for these weeks and beyond up to 6 months. I also was lucky to have long term disability that I got through work. This kicked in immediately upon the end of short term disability. This is when I was encouraged and helped to apply for ssdi. If you don’t have long term disability I would encourage you to apply for ssdi if your husband was/is unable to return to work (if he in fact even takes off of course) approaching the period of 6 months from disability. (Usually first day missed of work) ssdi is less than salary but it really helps, especially if there is no long term disability insurance to call upon.

Review all coverage he has through work and ask about FMLA.  

Thinking of you guys with only positive thoughts. 

 

(so sorry!!! just saw that hubby is not covered under FMLA.)

 

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