My Husband My World - by YROSS

YROSS I'm so sorry to hear of your husband and can totally understand how devestated you are.  I'm not able to help with any suggestions except possibly a second opinion.  Sometimes cancer can spread so quickly even under treatment.  I'm praying for you and your family.

Thank you Manapart for reposting this.  It shows how terrible this disease can be to the ones it affects.

Manapart good luck tomorrow at the oncologist and hope you get some answers that you need.

Kim

I'm sorry that it's progressed the way it has, we knew how stressed and scared he was, and now what it's doing to you is so unfair. If it were some local hospital, we'd recommend better treatment centers, but the Mayo Clinic is considered top notch, though I'd resist such a prognosis as well. Chemo is such a hit-and -miss treatment, and we need better, and both "better" and some peace are things Ihope for both of you....................................................Dave

Thankyou so much for posting for me Good Luck to all of you.  

Butt said:

Cancer is unpredictable and hard to treat., The fact that someone who is young and in good health makes initial treatments more feasible In comparison with an 80 yo. who has a bunch of pre-existing conditions. Despite this fact, many young folks die from this disease. For some it may be a few months, for some 2-3 years. I don t know what doctors told you in Mayo Clinic. I guess if there were issues from the beginning as you indicated it could have been a good idea to change the clinic. Doctors don t just seat there and lie.  They take the Oath and take it very seriously. They exercise there professional judgement with respect to their education and training  and with cancer it is very hard to know what will be next. Lie to patients? Good luck with that one. They know very well that they may seat in front of the board with well seasoned experts in thei field and have to explain themselves. The worst nightmare!!!!!!!!Oh, there is also an ethics board...... They may have another doctor on call from their practice who will read those notes if there is an emergency situation. Very embarrassing to look like a stupid donkey. They take notes usually during or after seeing the patients. In order to avoid the story he/ she said you May request those notes. I randomly request them from my oncolgyst that he doesn’t know about. There is no BS. He writes the way it is. Butt. 

I have acces to his patient portal and see all the notes.  I just feel like we are throwing in the towel too soon.  I called Cancer Center of America to see how fast he can be seen.  Going to Hospice and having him drugged to his death just does not seem right. He is tough and i just do not understand.  Read so many stories of hope for stage IV.  I cannot live without him so I want to be sure that I have enough people that understand what we are being told in hopes that someone else maybe had a similiar experience.  They never told us a time frame until now. Dr. said average was 5 years.  It has been 17 months with one break of 6 weeks. he was also taking xeloda and avastin, I swear I beleive that combo just spead up the cancer growth.  I noticed him going downhill in 3 weeks.  

YROSS said:

I have acces to his patient

I have acces to his patient portal and see all the notes.  I just feel like we are throwing in the towel too soon.  I called Cancer Center of America to see how fast he can be seen.  Going to Hospice and having him drugged to his death just does not seem right. He is tough and i just do not understand.  Read so many stories of hope for stage IV.  I cannot live without him so I want to be sure that I have enough people that understand what we are being told in hopes that someone else maybe had a similiar experience.  They never told us a time frame until now. Dr. said average was 5 years.  It has been 17 months with one break of 6 weeks. he was also taking xeloda and avastin, I swear I beleive that combo just spead up the cancer growth.  I noticed him going downhill in 3 weeks.  

I am now on the 5FU which is what Xeloda turns into after your body metabolizes it.   The doctors are giving an estimate on his remaining time.  I don't know how accurate that would be.  3 years ago, I told I had 6 to 18 months. 

I know the chemo can cause problems with bone marrow and also heart, liver or kidney problems, and could be why he got so sick and lost all the weight.  Has  he had Y90 or any ablations, radiation or surgery to get rid of tumors?  

Your husband could recover from this and have those extra years.   Janjan on this site was really sick for quite along time, she says she didn't even want to get out of bed or get dressed.  Now is talking about cooking dinner and driving herself to her own doctor appointments.  I agree with you about not wanting to be drugged by hospice until you die.  I think the pain meds like morphine speed up the death.  They slow down digestion and make you constipated so you can't even eat.  I do not want to go out that way.  

I'm so very sorry to hear of what you and your husband are going through. How devastating. You must both be in shock. I'll weight in with my two cents and hopefully can help a bit.

First, so they said he only has two months either way? Whether they treat him or not? That sounds fishy. You mentioned Xeloda. For the record, it did nothing for me. Too bad because it was the easiest chemo I've been on but I understand it can be hard on other people. 

I am currently stage 4 with mets to both lungs, my liver, and a reccurrance in my colon. Most are pretty small but there's one big one taht doesn't respond to treatment. Hopefully this time it will but it shows how oddly cancer and the treatments work. 

I was diagnosed just over 5 years ago and I'm not going anywhere anytime soon. My original surgeon had suggested I'd get over ten years, probably thirteenish. Since it's spread my onc has suggested 8 to 10. I feel that they're making progress all the time and there just might be a good treatment before I clock out. The point is, nobody ever told me that I'd be lucky to have five years or less.

I am currently on an immunotherapy 'chemo' and it works great for me, other than the one that won't respond. I'll likely be a cancer for lifer with regular chemo every 6 months or so. To keep it at bay but I'll never get rid of it. I'm okay with that. Going through the chemo crap I'm going through right now isn't fun but it's better than letting it get me.

My understanding is that they don't treat unless there's some hope of improvement. If a person is hopeless they do nothing. But all doctors are different so maybe I'm wrong. I know that if or when I get to that point I'd rather just be comfortable and not be poked at or given chemo. Why would anyone choose that if it's not going to help?

As mentioned, I've been so sick that I was almost completely bedridden. It's depressing and scary. It sucks the will to live. I didn't want to live if I was going to be dependant on others for every little thing, lying in my bed with no life at all. At Christmas my daughter bought me a used wheelchair to go shopping in and I was still exhausted for days after. Today I went to Wal-Mart with my husband and was able to walk out with him instead of having to wait in the car or going to the car partway through. I've had 4 treatments so far and was taken by wheelchair for the first one in early January, walked on my own but was wobbly for the second, walked more upright and quicker for the third, and was walking briskly for the fourth. Of course we all have different situations but I'm hoping to give you some hope for your husband. And I've heard of people that nobody thought would have made it doing well months later.

Doctors are not the be all and end all of things, either. I have a great onc and surgeon who are optimistic and realistic. But I've experienced a couple who were awful. My radiologist told me two summers ago that he wouldn't do radiation on my again because of all the internal adhesions it gave me previously unless I was in palliative care and it was for comfort. I was so upset I threw up all the way home, a 45 minute drive. Also, about two years ago I had en emergency doctor tell me he wouldn't do surgery on me because when he's done that on people like me they're usually full of cancer and he just closes them back up. I was there for a blockage. At the time the only mets I had were in my left lung. Also, I had a blood clot go to lung almost  ayear after diagnosis and the neurology expert told my family they should let me go because I'd never be the same mentally and would be in a care home if I survived. They refused and it took a long time to recover but within a year I was working again. 

I'm not an optimistic person, I'm more of a realist rather than pessimistic. But I feel that as long as we're here we have a chance. And we must have hope. To not have that is to have nothing.

I hope your husband gets well and this passes. That they can help him or at least help him live longer with good quality of life.

Take care,

Jan 

JanJan63 said:

I'm so very sorry to hear of

I'm so very sorry to hear of what you and your husband are going through. How devastating. You must both be in shock. I'll weight in with my two cents and hopefully can help a bit.

First, so they said he only has two months either way? Whether they treat him or not? That sounds fishy. You mentioned Xeloda. For the record, it did nothing for me. Too bad because it was the easiest chemo I've been on but I understand it can be hard on other people. 

I am currently stage 4 with mets to both lungs, my liver, and a reccurrance in my colon. Most are pretty small but there's one big one taht doesn't respond to treatment. Hopefully this time it will but it shows how oddly cancer and the treatments work. 

I was diagnosed just over 5 years ago and I'm not going anywhere anytime soon. My original surgeon had suggested I'd get over ten years, probably thirteenish. Since it's spread my onc has suggested 8 to 10. I feel that they're making progress all the time and there just might be a good treatment before I clock out. The point is, nobody ever told me that I'd be lucky to have five years or less.

I am currently on an immunotherapy 'chemo' and it works great for me, other than the one that won't respond. I'll likely be a cancer for lifer with regular chemo every 6 months or so. To keep it at bay but I'll never get rid of it. I'm okay with that. Going through the chemo crap I'm going through right now isn't fun but it's better than letting it get me.

My understanding is that they don't treat unless there's some hope of improvement. If a person is hopeless they do nothing. But all doctors are different so maybe I'm wrong. I know that if or when I get to that point I'd rather just be comfortable and not be poked at or given chemo. Why would anyone choose that if it's not going to help?

As mentioned, I've been so sick that I was almost completely bedridden. It's depressing and scary. It sucks the will to live. I didn't want to live if I was going to be dependant on others for every little thing, lying in my bed with no life at all. At Christmas my daughter bought me a used wheelchair to go shopping in and I was still exhausted for days after. Today I went to Wal-Mart with my husband and was able to walk out with him instead of having to wait in the car or going to the car partway through. I've had 4 treatments so far and was taken by wheelchair for the first one in early January, walked on my own but was wobbly for the second, walked more upright and quicker for the third, and was walking briskly for the fourth. Of course we all have different situations but I'm hoping to give you some hope for your husband. And I've heard of people that nobody thought would have made it doing well months later.

Doctors are not the be all and end all of things, either. I have a great onc and surgeon who are optimistic and realistic. But I've experienced a couple who were awful. My radiologist told me two summers ago that he wouldn't do radiation on my again because of all the internal adhesions it gave me previously unless I was in palliative care and it was for comfort. I was so upset I threw up all the way home, a 45 minute drive. Also, about two years ago I had en emergency doctor tell me he wouldn't do surgery on me because when he's done that on people like me they're usually full of cancer and he just closes them back up. I was there for a blockage. At the time the only mets I had were in my left lung. Also, I had a blood clot go to lung almost  ayear after diagnosis and the neurology expert told my family they should let me go because I'd never be the same mentally and would be in a care home if I survived. They refused and it took a long time to recover but within a year I was working again. 

I'm not an optimistic person, I'm more of a realist rather than pessimistic. But I feel that as long as we're here we have a chance. And we must have hope. To not have that is to have nothing.

I hope your husband gets well and this passes. That they can help him or at least help him live longer with good quality of life.

Take care,

Jan 

Thank you for your story I am really so happy for you.  He is also stage 4 colon cancer that moved to liver and lungs.  I thought the same that is why I have lost trust.  My husband is bedwritten 2 days after he was told about the spike in 3 weeks,.  At first I thought it was his will to keep fighting to stay alive but I can tell the pain is real as he never complains about it.  I am the realist and he is the most optimistic person I have ever known. I feel like we missed the right path for some reason.  We have had 3 horrible doctors in my opinion I just can't see hospice as choice so soon.  He is in pain so he is not thinking in the right mind. Jan do you mind sharing your dr. name?  Thank you enjoy your life every day.  I am not a weak person but watching your loved one lose their hard working life right in front of your eyes is torture.  just looking for a glmmer of hope so we can try to keep him for a longer time. 

YROSS said:

Xeloda

Hello Joan~ his heart is strong kidneys too I beleive the Xeloda is the problem it made him so sick/nausea upset stomach 24/7 even on his off week.  What is Y90? Radiation has never been an option I have asked and they never explained why not?  His tumor from his colon was removed in 10/2017 had a successful surgery.  How can he recover from this? 

Y90 is a form of radiation that is used to treat various forms of cancer.  It is commonly used to kill off inoperable tumors in liver cancer and when other cancers metastasize to the liver.   An Interventional Radiologist will  inject mmicroscopic beads (also called theraspheres) that are filled with the Y90 radiation into your hepatic artery where they travel to the tumors and cannot escape the tumor so they radiate for up to 60 days and kill the tumors off.  It is an outpatient procedure but does require anesthesia.

In my case, I had 20 tumors in my liver - with about 17 in the right lobes.  I had the Y90 in April of 2017 and my liver is still clear of tumors.  While some people have problems with the procedure, it is usually an easy recovery for most people.  It was easier for me to tolerate than chemo and my liver has been clear of tumors since.  (Side note I was on the Xeloda and Avastin maintainence chemo the time).   ABout a year later, they thought a new tumor had formed in the right lobe, but an area of liquid had formed in that lobe caused by necrosis of those tumors.  That was drained at the Mayo clinic April 2018.  

Microwave ablation was used to kill of 3 tumors in the left lobe of my liver that were close together. I had the ablation on liver tumors in January of 2017. The Interventional Radiologist inserts thin needles into the tumors and blasts them with microwaves to kill the tumors.  This kills them instantly and leaves an area like charcoal in the place of the tumors.  The liver will regenerate in that area.  This is also an outpatient procedure.  I had problems with blood pressure due to some of the anesthesia and was admitted overnight for observation. 

I also had 12 tumors in my lungs. One was over a centimeter, so I cryoablation on that lung tumor in September of 2017.  The IR doctor places a needle through ribcage and uses a freezing agent to kill the tumor.   I coughed up blood for a few days. and had a collapsed lung because I was lifting too much and also cleaning the garage out.  Collapsed lung is one of the risks they warn you about.  I had no symptoms of collapsed lung, just a little short of breath.  They found it because I had a scheduled CT scan a couple of weeks after the ablation.  I was in the hospital a few days for them to insert a chest tube into pleural cavity to reinflate my lung.  

Unfortunately I had gallbladder problems and was off chemo for months due to waiting for chemo to clear so they could operate on me and colon tumor and my lung tumors increased in size.   I then needed to stay off chemo to have colon resection which allowed the lung tumors to grow even more.  

Radiation is usually not used if you have tumors close to arteries, bronchial tubes, or other sensitive areas that would impair organ functions.  In my case, they won't radiate any of the lung tumors because I have them in almost every lobe and it would damage "too much lung real estateand cause breathing problems" as my doctor put it.  They may use radiation on one hilar lymph node but it is close to arteries, so my doctor recommends against that too.   

I believe the procedures I went through have extended my life overall.  My husband thinks they damaged my gallbladder and that the subsequent time off chemo and growth of lung tumors may have caused me to have an overall shorter life.  I guess it remains to be seen how long I live, and there is no way of knowing how things may have progressed if I hadn't had those procedures.  One of my oncologists said the chemo would have killed off the tumors but just taken longer.  As I said, I really don't know.  

Your husbands situation is a unique case, and he may not be eligible for these procedures.  It is probably worth talking to the doctors about.  

Why aren't they using 5FU if the Xeloda isn't working and causing such upset stomach? 

JanJan63 said:

I'm in Canada so it probably

I'm in Canada so it probably wouldn't be helpful but if you really want to know I'll message you.

I can tell you that I deal with fatigue and weakness every single day, some more than others. I have to take supplements for dehydration and I think that's helping a lot. But I still throw up every few days suddenly out of nowhere and get tired easily. Sometimes I go to do something and find I'm too weak and it reminds me not to push too hard. I'm proud of myself when I manage to make dinner and even clean up afterwards. For some reason I sleep alot. 10 hours a night. I'm telling you this so you'll know what's within the category of normal. I realize your husband is very ill but some of what he's going through might be something not to worry about. When I was on 5FU shortly after my diagnosis I would just lie in bed all day staring out of the window. The fatigue was terrible.

Oh boy, why can I not post anything short? I guess I just want so much to make people feel better about all of this and to have hope.

Hugs,

Jan

Can I IM you on this website?  Thank you.  I am canadian by marriage.  He is from Calgary,Alberta....the man of my dreams like my sister says he is still your boyfriend after 24 years and 11 months.  Our Anniversary is 3/27/19.  Praying for a miracle every day

Twinzma said:

YROSS

I am so sorry honey I hadn't really seen your post. My husband is also the patient....and it's not easy being on this side. We don't know what they are thinking half the time, nor do we know they are really feeling. Our life is out of control. Here were were happy as clams expecting to spend the rest of lives with this person and then some uptight stranger we hardly know shatters our dream by telling us they have cancer. It's not fair, it's not supposed to be like this. Oh and to salt our wound further like mine, your husband is so young too!  It is a nightmare we can't wake from, but yet day in at day out we are still in this and it doesnt' stop. 

There are days I blame myself and that I know I never will stop doing. He had a clean colonoscopy for routine testing and was told to retest in 5-10 years, it was 7 when he was diagnosed. Damn it to hell, if I didn't push him to go at the 5 year mark. After all I would have done it for myself, why did I not make him? Maybe if I would have paid closer attention to how long he was in the bathroom all the time, instead of brushing it off as the only quite place in the house I would have thought he may have been sick and it wouldn't have progressed this far. But the more I think this way the more it put's me into the dark place of depression and anxiety. I can't do this, my kids need me. So then I start to think well, when it's our time it's our time, there is nothing any of us can do. Maybe it was a blessing that we know I mean he could have been taken from me in a car accident or a massive heart attack where we wouldn't have been able to say goodbye. I don't know how long he has, there are days I think he can go on forever, then there are days it is getting to me those statistics in the back of my head it may not be all that long. 

Your husband has a wonderful woman behind him. Believe me, I know it's not easy coming here and pouring our heart out. I mean the first time I posted I felt so odd...nothing but random strangers and all. But these random strangers are so amazing here, they share everything, they are caring and wonderful! They have helped me so much and I know that they will help you to. We are blessed YROSS, to have found them! You are doing the research for him, you are fighting for him you are his biggest advocate. As he is your world, you are is.

Like snowflakes each patient is different, what works for one won't work for the next. Which meds make one sick may not effect the next at all. Throughout treatment my Jim has done very well. The only really symptoms have so far been tireing easy and a severe rash. His oncologist jokes that his modeling days are over. He started on FolFox with Avastin dec 2017, there was a slight uptick in cea he was switched to Folfri with Erbitux in March of last year. He started the chemo pill in Sept when we started looking for surgical options, to wit there have been none so he had the y-90 done Dec first treatment went very well. They treated the bulk of the mets which he carries mostly on one side of his liver there were 28 on that side. On Feb 14th they treated the last 2 mets on the other side, yeah 30 flipping mets in all. This time though something is off. He has been in a lot of pain, something his has yet to complain about. We were told post op pain was normal because the liver does inflame but it is still going on now..2 weeks are normal this isn't right. So tomorrow we see the doctor again. I am really worried, thinking maybe a bead has traveled somewhere else in the gastrointestinal track. 

The y-90 is not really a curative treatment. In theory it could kill all the mets, but in reality the expected and typical outcome is shrinkage, hopefully to the point the patient becomes surgical or allowing other therapies to do their job. It's my husbands best shot at any meaningful survival. As the surgeon told us so bluntly, it's not the colon cancer that will kill my husband it is the liver. Why couldn't we have caught it in time???? My kids are 13 now, they need their dad! This sucks!!! 

I suspect the reason why no one has spoken to you about the y-90 yet is because he has the mets in the lungs. I think that those have to be treated first. I say that because had my Jim had mets anywhere else it would have deemed him not a candidate by his doctor. If I were in your shoes, I would try to consult with a surgeon that specializes in lung cancer to see if they can treat that. 

Honey, look I know you are so scared, I am too. They are our life, if something were to happen.....yeah this really stinks! Try to keep your chin up, step away from Dr google from time to time and above all take care of you too. You are not one bit of good to anyone if you break down. I know you have been in this for a while too but we need that constant reminder because frankly we just don't do it. Hugs!!! 

 

for such a wonderful response, you made me feel special....no one sees what we go through as spouses and caregivers breadwinner etc....he had such a small lung spot it grew due to the rigors Mayo did this to him the day of his infusion they did not know what was wrong we ended up in the hospital with a lung that was surrounded by maliginant fluid, this I know is a side effect from chemo they drained 3 liters worth and then they had surgery to insert a Pleurex I had to drain it daily for 4 weeks what a set back!  I know the rigors set the cancer in full speed and the work it took for him to breathe normal again.  If this was not bad enough his next round it happened again.  My husband has been through so much and after journaling I realized just how bad it has been from the emergency stat removal of the tumor 7 inches went with along with lymph nodes and appendix, he thought it was appendixcites I think back and how I wish It was.  I received a phone call during a board meeting and my life has been in a talespin since 10/17 the worst day of my life. Thanks for the y-90 101 no one ever mentioned this.  Not sure why the liver has the most.  Thank you for your time and kindness.  Hospice came today  I can only succumb if he must, as long as he is comfortable at home that would be my wish up to him...I sent a request for another opinion, Cancer treatment Center of America will conduct an evaluation.  When I asked him intially he said no when Hospice came he realized that once the drip starts he will no longer have his wits to have quality of life or a real conversation.  Still have hope for some reason, not sure why.  I also suffer from guilt because since child birth of my second born at the age of 35 I had irregular bleeding, because of this I had a colonospy every 5 years to be on the safe side. it was a basic fichers which was great news.  I remember asking him at 45 to have one and he said he would at 50.  50 came and i forgot about it   55 hit and I said why have you not been screened?  He said he would and 2 years later as he was golfing he had a horrific pain in his right side....I should have been a jerk until he did it.  I still blame myself for not standing my ground.  This lesson learned will I know shorten my life.  13 year olds are awesome!! I hope they spend time daily with your husband and that he enjoys every second with them.  My boys are 30 and 24 when he told them they looked like they were young boys again.  My heart has been shattered since.  Good luck at your next visit.Take Care