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Husband with stage IV rectal cancer.

Husband with stage IV rectal cancer.

Posted by ChrisB1968 on Aug 7, 2019 9:29 am

In February 2017 our world turned upside down as my husband was diagnosed with stage IV rectal cancer.  We had no clue as to what to expect.  He started chemo on March 22nd 2017 and responded well so his oncologist changed his treatment.  From that point on the cancer progressed slowly and is attacking his liver.  We are unsure about the outcome.  In February 2019 on my birthday he developed a pulmenary embolism for which he has to inject a blood thinner daily. In May he was hospitalized for a pain in his right side. He also had a fever for a few days.  They gave him an intravenous antibiotic during hisv5 day stay in the hospital and after several tests (scan, blood work, ultrasound) they couldn't really pin point the problem. His liver had inflammation due to the several mets so they concluded that this was the cause of his pain and fever.  The mets were squeezing the bile ducts. He hadn't received any chemo for the past 4 or 5 weeks since we were waiting to see if our insurance company would pay for an oral chemo treatment that costs 6600$ a month...with insurance our cost is about 1300$.  I started a Gofundme page to help with the costs but now we're not sure he can even take the chemo since his belirubin is too elevated .  He has been receiving intravenous chemo accompanied by an oral one but at the end of every treatment we never know what to expect,  he isvp experiencing a little jaundice and a lit of fatigue.  My father passed away just a couple of weeks ago...so now i'm not sure i have the strength to go through all of this. We have 5 kids and 8 grandchildren...my husband is only 55 and I 51.   I try to put up a strong front, but i feel like i'm breaking down slowly.   Feels good to put this out.  Even though I have a pretty good support system it's still hard. 

Re: Husband with stage IV rectal cancer.

Posted by Brighty on Aug 7, 2019 10:22 am

ChrisB1968‍   welcome and so very sorry what you are going  through  and for the loss of your father.     I was a caregiver to my fiance  who had stage 4 esophageal  cancer.     It turned my world upside  down  to say the least.    I'm so glad you have a good support system.    If you have questions  on caregiving coping tips please feel free to ask or private  message me.   I'm going to tag Aries‍ into the post who has a similar diagnoses.    She will be able to guide you further.    She is one of my heros and I'm sure she will have sound advice for you.    

Re: Husband with stage IV rectal cancer.

Posted by Aries on Aug 7, 2019 11:25 am

Thanks for the tag Brighty‍ 

Hello ChrisB1968‍ I am so sorry to hear about your husband and condolences for your loss of your father. 
I was diagnosed with stage 4 rectal cancer mets to my liver on February 25th of this year so I am still in what I think of as early stages of treatment. I am on chemo - Irinotecan along with Leucovorin and Fluourourcil (5-FU). Treatment is going well and I have been fortunate to have minimal side effects. Obviously treatment differs for everyone. You said his treatment was going well but his Oncologist changed it?
I am sorry to hear your husband is struggling - at his initial diagnosis, if the cancer was contained to his rectum only then it would not have been stage 4 at that time; was surgery not an option to remove the tumour?
The pain in his right side may have been his liver; I had the same thing back in February and it is how I got diagnosed. It really felt like I pulled a muscle and it was hard to take more than a shallow breath.
I assume you have an assigned Oncologist - I would definitely be asking questions about ongoing treatment and a plan. It seems like you haven't really been given any proper guidelines. I would recommend you write down your main questions and take notes on the answers. Don't be afraid to demand specific information and even seek out a second opinion if you feel your Oncologist is not up to par. I don't think each end of treatment should then be a guessing game about the next one. I know my treatment plan for the foreseeable; your husband should too.
I am glad you have a great support system around you; as easy as it is to say, try to remain as positive as you can ... we are all here for you.

Feel free to reach out any time and you can private message me too if you like.

Keep us posted and I hope things improve soon.

Aries 

Re: Husband with stage IV rectal cancer.

Posted by ChrisB1968 on Aug 7, 2019 1:07 pm

Thank you for your quick response...my husband was receiving a similar treatment at the beginning, but after about 6 months his oncologist took out the oxyplatin and was prescribed Avastin. When he started his CEA level was at 44 which we thought was high at the time and now his count is at about 1200.  He was inoperable since when he was diagnosed he was already stage IV with several mets on both lungs and several on his liver. He did go for a second opinion but was told that his current oncologist was following the correct protocol for his type of cancer.  We are in the Montreal area and since my husband is military he asked to see if another treatment could be available in Ottawa.  But unfortunately they all say the same at this point he is at the endvof whatbthe doctors can offer.  The Ottawa oncologist will try to get him into experimentalvtesting but with his belirubin reaching 50 the chances of him being accepted are low.
He seems to be getting weaker ...we just went out for groceries and he had to sit while i passed at the cashier..He finds it very difficult to be at a point where he has to take breaks and ask for help with certain bigger chores.

It can't be easy for you as well...good thing that you have little to no side effects, my husband was the same.  However with the oxyplatine he has the tingly feeling in his extremeties and throat when touching or drinking something very cold. I hope and pray that your treatments will continue to go well and that you may live a long life and hopefully be freed of this horrible thing. 
thank you and best of luck to you.!!


 

Re: Husband with stage IV rectal cancer.

Posted by Cynthia Mac on Aug 8, 2019 8:19 am

ChrisB1968‍ , I, too, am sorry that you have lost your father, at all, let alone at a time when your husband’s illness is affecting you both so much.

I agree with Aries‍ ‘ suggestion to write down your questions. I do this for my Dad (stage 4 lung cancer, Mets to the liver). I double space my questions so I can write the answers right below the question!

Please do your best not to burn yourself out - I could hear your fatigue in your earlier post. Now is a good time to lean on your support network so you can have a couple days of self-care, to call the cancer help line, or to seek counselling through your local cancer centre. 

My sister took our father to his chemo treatment yesterday, and to his bone scan this morning. Just doing those two things gave me some time to finish up a couple projects at my house, and begin a design for an magazine article for which I know the deadline is looming. I also needed that time to clear off some of the emotional build-up.  While thoughts of Dad didn’t leave me all day, by addressing these other things, I feel stronger this morning.

I hope this is of some help to you.

Re: Husband with stage IV rectal cancer.

Posted by ChrisB1968 on Aug 8, 2019 12:16 pm

My husband is looking into changing his oncologist...when we ask him questions he never really gives us a straight answer...when we asked him about a prognostic he always gives the same answer.."statistics say between 2-1/2 to 5 years.  He's very cold and when my husband asked to be put on a list for trial medicine he said "when I have time"!!! And it's a waste of time...Wtf...!!

We know that he is going toward palliative care but we just don't know what to expect...

Re: Husband with stage IV rectal cancer.

Posted by Runner Girl on Aug 8, 2019 12:29 pm

Hello ChrisB1968‍ ,

I think it's a terrific idea to change his oncologist.  He needs someone he can trust, talk to and get appropriate answers from.  His treatment will go a lot better if he has confidence in the doctor looking after him.

I'm having my own grief with my oncologist so I understand what you're going thru.

Runner Girl - Gayle

Re: Husband with stage IV rectal cancer.

Posted by Whitelilies on Aug 8, 2019 1:54 pm

Hello ChrisB1968
My name is Lillian......I am sorry, for the loss of your father.  Hold on to strong memories to get through the difficult times.
(My dad....88.....JUST got the diagnosis of colo/rectal cancer as well)
I wish you strength, to infuse your husband, with strength too.
NO doctor should be "brief/uncaring"...try to switch to another Oncologist, who will listen, be kind, and do a skillful job.  We are humans! Not mice!
At the age of 56, I too received a diagnosis of Colo/Rectal Cancer....stage 2/3.
I too have paid that piper! If I can further support or guide you, please reach out....post or PM me as well.
I not have chemo; I did have radiation, to shrink tumour (nasty location....then surgery #1.....then BAG; YUP......then heal......then surgery #2 to remove bag (time to party !)....then more healing......now lots of praying.....lost 24 pounds.

We all have different journies on the same path of Cancer

Sending Warmest Regards,
Lillian
@Whitelilies   

Re: Husband with stage IV rectal cancer.

Posted by Aries on Aug 9, 2019 3:50 pm

ChrisB1968‍ - I agree with Runner Girl‍  - you should definitely fire your Oncologist and get a new one. I hope you can get assigned someone else ASAP. 

It sounds like your husbands treatment plan was not planned out very well - changing treatment when it was working to something else that seems to have had worsening effects and now getting to a point where they are close to saying there is nothing more to be done! That's pretty devastating!
I know there is a lot of controversy around Alternate therapies but have you looked into any other options? 

My heart goes out to you and your husband. I hope a new Oncologist can turn things around. 

Please keep us posted.

Re: Husband with stage IV rectal cancer.

Posted by ChrisB1968 on Aug 15, 2019 8:20 am

We saw the oncologist on Monday...the prognosis isn't good...gave him about 3 months...no more chemo since the cancer is progressing and his liver is failing...😪

Re: Husband with stage IV rectal cancer.

Posted by Lacey_adminCCS on Aug 15, 2019 11:03 am

ChrisB1968‍ 

I'm very sorry to hear this news. Have you been referred to a palliative care team for support? I think you might find our booklet Advanced Cancer helpful.

How are you doing?

Thinking of you,
Lacey

Re: Husband with stage IV rectal cancer.

Posted by ChrisB1968 on Aug 15, 2019 5:25 pm

Yes he has been referred to a palliative care unit ..we also have a nurse coming some time tomorrow morning to evaluate his needs although at this time he is still able to do everything on his own.

The hardest part was giving the devastating news to our 5 children...as for me I'm doing reasonably well...I have my moments of despair and wish that this whole nightmare would just go away. We had retirement plans and trips to do...but that is no longer possible. 

we had our children young and never were able to travel and figured we would have enough time in our 50's and beyond. But life threw us a curve ball and we have yet to recover.

thank you for your thoughts and prayers.
Christine.

Re: Husband with stage IV rectal cancer.

Posted by Ohmy on Aug 16, 2019 8:03 am

Hello to you. My heart goes out to you and although this is a hard time, you have Inspired me to live my life as much as I can in the wake of my own diagnosis of colon cancer. My brother was diagnosed with stage 3 colon cancer and now is stage 4. Times are tough so I agree with earlier posts, lean on supports that may also include your kids. Life can truly surprise us that's for sure. Up until.jan 2019, i had no cancer in my family and now two of us are dealing with this awful disease. You take care of yourself amd enjoy the times you have together with your husband and Family.

Re: Husband with stage IV rectal cancer.

Posted by Cynthia Mac on Aug 16, 2019 8:10 am

ChrisB1968‍ , I’m sorry to hear your news. I have read part way through the Advanced Cancer booklet, and it has helped me come to the place of acceptance about my father’s terminal cancer. Your kids might get some benefit from it, too.

Re: Husband with stage IV rectal cancer.

Posted by ChrisB1968 on Aug 16, 2019 8:16 am

I'm sorry to hear about you and your brother...I can't believe that in this day and age people are still dying of cancer.

we went to Ottawa for a second opinion (we live in Quebec) and there are no other options besides doing a biopsy on his liver and sending that to the states to see if they can find a different type of treatment that could help...however, the cost for this is 6000$.

So my older son is ready to sell his dirt bike and our RV to get the money....we have to call today to see if this is still an option...😔 very frustrating.