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Old 11-01-2007, 07:21 PM   #1
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Unhappy Bad Bad news

It was a tough week for Brian last week. Monday we went to the doctor who informed us that the ct scan he had done a few days before showed that the cancer has spread and they decided to stop his chemotherapy. The said that they will see about trying him on folfox. Although I haven't researched it, the doctor has told us that they side effects are not good. There has only been one woman at the cancer center that has tried this particular treatment and not had great results. If anyone has information on this treatment please let me know. They have also told us that there is alot of fluid between the chest wall and the lungs. He is having alot of trouble breathing now.
By the time we got home the doctor called with more distrubing news. The cancer has now travelled to the spine. They needed a MRI as soon as possible to see how far it has advanced. They are considering now radiation. I have no idea how his body will handle that. The MRI was done yesterday but we have had no results yet. Probably monday at the next appointment.
Second call to us the same day. They found a blood clot, it is quite large and in the jugular vein. They want to do an altrasound. We now have him back on the blood thinners. They are quite concerned about this.
Once again I have been searching the internet trying to make sense of all this but now I am overwhelmed with the information and I think I am confusing myself more.
Brian is devestated. His parents are here this week when we got the news. Brian is trying hard to understand and deal with it. He has decided to discuss his wishes and with everything I have read, I have tried to tell him I will stand by him with whatever decision he makes about the treatments but I having a tough time doing this. His parents are urging him to fight. They are telling him that everyday he fights he is one day closer to the possiblity of finding a cure. I know that some people will agree with that thought but I think it is extremely hard on Brian. He has already said that he has had enough of all of the treatments and the pain. I am struggling on both ends.
Should I be encouraging him to fight? I want him to fight but I also want him to have peace.

 
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Old 11-02-2007, 01:27 AM   #2
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Re: Bad Bad news

I have no advice, just some massive {{{{{{{{hugs}}}}}}}}}

It is HIS decision if he wants to fight or not, not his parents. You're a strong lady.

 
Old 11-02-2007, 04:45 AM   #3
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Re: Bad Bad news

Jelz, I can only imagine what you are going through! What a terrible time for you! I agree that Brian has to be the one to decide whether to try further treatment or not. Pressure is so often put on the patient to go on fighting, giving him/her the impression that if he or she does not, then they have "given up" and somehow "failed" I feel very strongly about this because no-one knows what it is like to be the patient.

Brian has been through so much and is the best person to know if he feels his body (and mind) can take anymore. I would not discourage him, but would continue to let him know that whatever he decides is OK with you...that you will stand by him whatever.

It is always hard for caregivers and family members to accept the possibility that no further treatment can be effective and that in fact, such treatment might shorten the life and certainly reduce the quality of life for the patient.

Please continue to check in here when you can to let us know how you are both doing. My heart goes out to you and I am sending love and prayers.

Alison
__________________
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 11-02-2007, 02:55 PM   #4
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hiswife1 HB User
Re: Bad Bad news

Jelz,

I am so very sorry that you are both going through this.

I have to agree with Alison, don't discourage him but let him know that you will stand by him no matter what he decides. I know this is so very hard for both of you. Lots of prayers for you both. dee

 
Old 11-03-2007, 06:43 AM   #5
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Re: Bad Bad news

Jelz, I don't know what to say other than that I agree with Dee and Alison. The choice is his. This is very sad news, indeed, and I am so sorry you both are going through this.

Pam

 
Old 11-03-2007, 09:35 AM   #6
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Re: Bad Bad news

Hello Jelz

So sorry to hear of your situation. I would echo ali's comments too. Support his dicisions providing that they are informed decisions. I know you will be working hard to find out all you can.

My husband was on Folfox. I understand that side effects can vary but his were as below:-
Bad nausea from infusion day one through and for next couple of days. the first cycle was rough as they did not give him the strong enough anti-nausea drugs and he was really sick. That was a tough lesson well learnt. From there on at each cycle he took stronger anti-nausea and this worked well. They also gave him a steroid tablets along with infusion to increase efficiency of the anti-nausea drugs.
Metallic taste in mouth.
Very sensitive to cold.
Hair darkened and thinned but no hair loss.

The nausea and cold sensitivity wore off a couple of days after the infusion stopped. Unfortunately the anti-nausea drugs increased the risk of constipation which is a big worry after colon surgery so he also took stool softeners.

It is a big drag ........ two week cycles ...... feeling lousy for 3 or 4 days at a time and the constant blood checks and assessments to make sure you are ok for the next cycle. But for my husband it worked. When he was diagnosed with colon cancer it was already stage 4 with mets to liver and primary tumor stuck to his bladder. That was 4 years ago. The folfox shrunk his liver tumors to allow liver resection.

we were told that the first 6 cycles are the most effective time for shrinkage.

I really dont know if all the above is of any use to you Jelz. We were in a similar postion to you 4 years ago where husbands prognosis was not looking good but his medical team were prepared to fight for him and so he decided that he would give it a try. He knew that he could stop at any time.

Id be happy to try and answer any questions that you have. I do not post much on the boards here or jorge and james either but always look in.

Wishing you and Brian well.
regards to all
ktee_uk

 
Old 11-03-2007, 02:46 PM   #7
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Re: Bad Bad news

Thank you ktee, I am so thankful for your information. Any information is better then no information. I have heard from one other that the folfox causes the user to become extremely cold. The one woman that I had talked to said everytime they had a drink of anything cold that it felt like her teeth had froze. The metallic taste I had not heard but it certainly makes sense. I understand it works differently for everyone but at least it is some encouragement.
I am not sure what Brian will decide to do. He isn't having a good weekend, been in bed most of it. Hopefully we will get more information on Monday.

Last edited by jelz; 11-03-2007 at 02:49 PM.

 
Old 11-03-2007, 03:24 PM   #8
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backslide05 HB User
Re: Bad Bad news

Quote:
Originally Posted by jelz View Post
Thank you ktee, I am so thankful for your information. Any information is better then no information. I have heard from one other that the folfox causes the user to become extremely cold. The one woman that I had talked to said everytime they had a drink of anything cold that it felt like her teeth had froze. The metallic taste I had not heard but it certainly makes sense. I understand it works differently for everyone but at least it is some encouragement.
I am not sure what Brian will decide to do. He isn't having a good weekend, been in bed most of it. Hopefully we will get more information on Monday.
jelz,
I just wanted to say I've read your posts and my heart goes out to you --my husband is undergoing Folfox right now and has completed 9 treatments. There is cold sensitivity for a few days after treatments and the taste he describes is like going to the dentist and feeling anethestized. But it's not unsurmountable. I hope that if Brian decides to continue the fight, that he won't be too fearful of this treatment, and it could make a difference --you don't know really what works and what doesn't until you try. people have different chemistries.
I send prayers and well wishes your way

 
Old 11-03-2007, 05:12 PM   #9
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Re: Bad Bad news

Brian will be 53 years old next week. He was diagnosed 2 years ago at the end of this month. If you go back and read my first few posts it will explain in detail. The short of it is, he was told he had two months, they discouraged him from trying chemo because he was so weak. His weight was 113 lbs, 6'1 tall. He had tumours throughout his small and large bowel. He was not able to eat and very little liquids. He fought like hell, tried the chemo anyways and started gaining weight and was doing well until July.
Thanks backslide for the information. I hope your husband and ktee's continue to do well. It is encouraging to hear. It makes me feel better. I hope his decision will be to continue and try this but I will stand by him whatever his decision.

Last edited by jelz; 11-03-2007 at 05:15 PM.

 
Old 11-05-2007, 06:39 AM   #10
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Re: Bad Bad news

Hello,
Hope you both have a good day today. Just a question. Did your husband have rectal cancer 2 yrs ago, were there lymph nodes involved and what stage was his. The reason I'm asking is that my dad was diagnosed Feb. 06 with 13 lymph nodes involved and stage 3. Now he has 3 small spots on lungs, not a 100% that they are anything??

Cynthia

Last edited by cynthiaf; 11-05-2007 at 08:58 AM. Reason: remove email, wasn't aware that couldn't use email addresses. Sorry!

 
Old 11-05-2007, 04:43 PM   #11
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Re: Bad Bad news

When Brian was diagnosed, everything was a blur, we were told he had cancer (colon they thought) and a tumour, he had to be operated on right away. They aborted the operation saying that he had tumours through his small and large bowels. Tumours were throughout. No idea about the lympnodes at that tiime. He has done well for the 1 1/2 years. Pain and sickness but some good days.
As of today we found that it is in his bones, chest, kidneys etc. He is more comfortable today as the doctors finally convienced him to take the morphine and several other med's, something he hated doing. We are still hoping that the folfox treatment will help and that he may have more time.
I am sorry about your dad and I hope you will listen to some of the people on this site. I use it for venting, something I sometimes need so much but it is helpful. I hope he does well if he is taking a treatment but the one piece of advise I can give you is this:
If a doctor tells you that there is only a 20% chance, take it because if it works for you (your dad) then it is 100%.
Good luck!

 
Old 11-05-2007, 06:02 PM   #12
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Re: Bad Bad news

It is good to hear that Brian is a little more comfortable and that he is willing to take meds to help with the pain. Maybe he is more willing to try the Folfox if he feels he can keep any pain under control. There is nothing more debilitating than pain. You are a wonderful wife, jelz and I know this is hurting you so much. Hang in there and vent as often as you wish. We are here for you in our small way.

Love,
Alison
__________________
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
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