bad news for us today

Chantal
So sorry to hear
Chantal
So sorry to hear your news, this is such a devastating disease that can move so quickly, unfortunately Lee probably does know his body and maybe realises he needs a couple of weeks to try to help his body recover before the crippling effects of Chemo, My thoughts and prayers are with you.
Ann

Daisylin said:

feeding tube
I forgot to mention, I asked about a jtube, and the doc said he does not need it yet. From what I've read here, the sooner the better, even if it's just sitting idle, waiting to be used in the future. Perhaps that's only in the case of those who are having surgery? Any of you stage IVBs out there have advice for us there? In the last week, his eating has been almost non existent. He'll try to eat, and either the food gets stuck, or he gets frustrated by the pain and lack of appetite. He has not lost significant weight, but the way he's been going lately it's not looking good.
thanks again

Feeding tube
Steve and his doctor agreed to no feeding tube. Of course, he had already given up the chemo at that point.

Sorry to hear
Chantal,

Sorry to hear about this recent news. I know this must be trying times for you, and only the two of you can make the right decisions about chemo and treatment. I will keep both of you in my thoughts and prayers for strength both physical and mental. Try to keep smiling and laughing through difficult times.

Hugs, Niki

jojoshort said:

Oh my goodness
Dear Chantal,
I can totally feel your pain as I read your post. How I wish we had that crystal ball that could tell us in advance if a particular chemotherapy would help or be more hurtful...
That said, we had to switch chemos from one which crippled Steve's legs to one that didn't have that side effect. Not all chemos will do the same side effects, and some are well tolerated by some and not by others. In our case, Steve just got tired of the side effects and has thrown in the chemotherapy towel. That means accepting his fate, our fate, and trying to enjoy whatever moments we can garner out of our last days together. Hard as that is--it's so hard to know if maybe, just maybe, another brand of chemo might have kept his cancer at bay for just a bit longer??--it was his decision and one which forces us to focus on today, just today.
We don't live forever, though I'd have loved it if we could've had 20 more years together. Life doesn't ever offer anyone a guarantee. We've been happier and luckier than most in this world, and for that I'm grateful.
Whatever you and Lee decide, it has to be your decision and no-one else's. Whatever you need to do to make Lee comfortable, don't give up asking for symptom relief.
I'm always available if you need to just vent.
We can do this for our husbands and we will.
Jo-Ann

thanks
I read your response and it has helped me. Thank you Jo-Ann

Chantal, I am so saddened to
Chantal, I am so saddened to hear your news. I know everyone has different opinions and stories and no two EC sufferers are alike, but I wanted to share with you what we went through in January. Right after the first of the year, Rickie entered a clinical trial after not having very good results with his first round of chemo. It was a double blind study, and 2/3 of the participants received the drug and 1/3 did not. It was a very promising drug and had actually skipped the phase II trials as they thought it was so good. Rickie started on it and we would travel to Houston every 2 weeks for the infusions and check ups. The first round was to last 6 treatments. By the third week in I could tell that he was not so sure it was helping, but he kept saying he would stick it out and see. His condition kept deteriorating and I was so worried. We had a business trip in Las Vegas that he insisted on going on and I thought it was going to be the end of him. He became so week and was unable to eat and was in constant pain. By the end of February when we went up for the last treatment we along with the doctor made the decision to pull him out of the trial. The CT scans show the cancer had grown and nothing had improved. We assumed that he had been without treatment all those weeks. The doctor immediately began him on the chemo he is now taking, Erbitux and Irinotecan, and the improvement was amazing. Within days of the first infusion he was feeling much better and getting his strength back. After a bout of diarrhea from the chemo, where he lost 20 lbs, he has continued to improve and the CT scans in May showed many places where the cancer was "resolved". We are due back in Houston the 8th of August for scans again to see what is happening. I do not believe that we would have had this time if not for going back on chemo.
I also wanted to address your questions about the feeding tube. Our doctor in Houston was also not so keen on Rickie having a feeding tube, even though our Oncologist and GI doc at home had been trying to give him one since the beginning. Finally, when we went back up in May and he had lost more weight, we again talked to the doctor about it and he agreed to having it done. However he did not recommend a j tube. He said it was to invasive and since Rickie was not scheduled for surgery or a laproscopy, he ordered a PEG tube be placed. That is placed in the stomach using endoscopy, and then they push it out from the belly. They tried this procedure and were not successful and ended up inserting a PFG tube which is done with interventional radiology. This was inserted into the stomach from the outside and used fluroscopy to guide the placement. Since Rickie is Stage IV inoperable, there was no need to place the tube in the small intestine, thus saving the stomach for later surgery. He has had no problems with nausea and the feeding go smoothly. The only downfall is that it is gravity fed and not on a pump. I hope this gives you some useful information. Will be praying for you both.
Cheryl

Daisylin said:

Barbara
Well, in reply to your first question posted above, I'm not in England, I'm from London, Ontario, Canada.
Lee is 48 and I'm 39 years old. We've only been married just a bit over a year, (but lived together together 8 years before getting married) I feel like I've been robbed of our future together.

And you are right, it is so heart wrenching to watch him struggle to eat, and be in pain and suffer all the morphine side effects, while the daunting thought of chemo looms ahead of us. The idea of facing chemo while he's feeling this poorly is terrifying. I don't know if he could cope with it. He's already fairly disgusted with life, and at times it seems like he's ready to throw in the towel. He's overwhelmed with everything and the slightest things often make him angry and unreasonable.

In regards to the morphine, he's decided to cut back on the recommended dosage that the doc gave us. He was given 30mg slow release every 12 hours. Lee has decided to go down to 15mg every 12 hours and use the liquid morphine as a PRN. In the last 2 days, we have seen some improvement. He is still not eating well but he's not sleeping around the clock either. I'm not sure what everyone means by quality of life, but to me it's not sleeping, choking on food and feeling downright miserable all the time. Six months after diagnoses I still sometimes think I'll wake up and this will all just have been a bad dream.

As always, thank you everyone for your kind words, advice and support.
Chantal

Hi Chantal,
My husband is
Hi Chantal,
My husband is 45, and at the moment up in hospital with high temperatures, he too is not eating well and not sleeping well either with either fever or chills, it is so hard to watch someone you love in so much pain and yes I question whether this is "quality of life", we made the choice to go another round of chemo, perhaps on reflection not such a good choice, but its a little like damned if you do damned if you don't, just wanted you to know that you are not alone and from one caregiver to another I understand how hopeless you are feeling not being able to fix everything (or anything), I know with Mark he hates it when I fuss over him and sometimes I just have to say please let me, its all I can do. Thinking of you and hoping that Lee starts to feel some relief, take care of yourself, you are in my thoughts.
Ann

fredswilma said:

Hi Chantal,
My husband is
Hi Chantal,
My husband is 45, and at the moment up in hospital with high temperatures, he too is not eating well and not sleeping well either with either fever or chills, it is so hard to watch someone you love in so much pain and yes I question whether this is "quality of life", we made the choice to go another round of chemo, perhaps on reflection not such a good choice, but its a little like damned if you do damned if you don't, just wanted you to know that you are not alone and from one caregiver to another I understand how hopeless you are feeling not being able to fix everything (or anything), I know with Mark he hates it when I fuss over him and sometimes I just have to say please let me, its all I can do. Thinking of you and hoping that Lee starts to feel some relief, take care of yourself, you are in my thoughts.
Ann

Between a rock and a hard place
For all of us Stage IVb caretakers, I do hope that you don't second guess your decisions to either go ahead with more chemo or not. ( Well of course we do; right now I'm second-guessing our decision to NOT do more chemo). We are truly between a rock and a hard place, because the chemo may offer some quality (after dealing with the chemo side effects) and time, and not doing chemo may offer some quality--but no time.
We are at the stage now where the cancer is having it's way with Steve's lungs, and that,too, is no picnic.
Chantal and Ann, especially, we know we are doing the very best we can with the choices we have. To go either route offers no guarantees of a quality of life. The most we can do is advocate for our loved ones, to get them the best care possible, and to give ourselves a bit of respite so that we can stay strong for all those things we deal with. Even the doctors with all their training don't know what will happen in each individual case. And that's their job.
It's a cruel disease, this cancer. And we are only human. I do hope you find some relief for you and your husbands in the coming days and weeks. I keep you all in my thoughts daily.
Jo-Ann

Daisylin said:

morphine, the other devil
Well, as I stated last time, morphine seemed to be causing more side effects than what was tolerable for Lee. Yesterday he decided to stop using it, since he was feeling better before he started taking it. Now, I think perhaps he stopped taking it too quickly and is facing more problems. He spent the whole day sleeping yesterday, in between constant waves of extreme hot and cold flashes. He was dripping with sweat on minute and freezing cold the next. He has eaten very little in the last few days, and vomited up everything he has eaten. He has no appetite at all. Even walking from the bedroom to the couch was almost too much to manage. Today he feels a bit better, but mostly the same as yesterday.

In my constant internet searching, I found that morphine use and withdraw can cause all these symptoms. (and more) They are worse than the pain he was suffering initially when he was prescribed the morphine. I think a phone call to our doc is in order to see about some other forms of pain management.

In my previous postings many of you replied about the pros and cons of morphine, and I guess he's one of the unfortunate ones that does not handle it well. Hope something else will be made available to him.

Chantal

Morphine and I don't mix.
Morphine and I don't mix. Totally unrelated to EC care, but when I have had morphine, I am sooooo nauseated. Once I figured it out, the doctors started using another medication for post surgery pain. Since the new medicine is so hard on the stomach, it is given in very limited dosage; however, the pain is gone and your brain is still there.

On morphine, I would be sort of foggy (foggier than my usual state) and like my body was in one room and my brain was on vacation. Yet, in the back part of my senses, there was still pain. If I'm going to feel pain, at least let me think clearly.

My husband didn't like morphine that much and almost developed the ICU hallucination syndrome or whatever it's called after being in there 10 days so when we got rid of it, he felt much better. However, during the intense pain cycle, the morphine pump was very helpful. So, morphine is a mixed bag. There are times it's needed in spite of its side effects, and there are times to use another pain option.

When at home, he had trouble controlling pain and didn't want to be fuzzy headed, and he used a fentyl (spelling) patch. I don't know what circumstances it is permitted but we liked that he didn't have to add it to his healing stomach area. I know this is not much help but I was wanting to let you know others have trouble with morphine. Silly question, I know, but he is getting some anti-nausea medicine, isn't he? Hang in there.