My father

Douggie · May 2007

Ive posted int he past about my father. Sorry I havent been arround lately to post updates. Ive kinda had my hands tied.

Anyway, Hes a stage 4 that had major complications from his surgery. But finally made it out of the hospital(after a little over 2 months). I know hes going through a lot both mentally and physically (as his new wife told him to pack his bags the last time he was in the hospital).

I have a lot of questions....some I should ask his doctor about but hes been in and out of the hospital so much (I spend the night with him when hes in) that I never see the guy anymore (but he never really gave difinitive answers anyway). So here are my questions:

1) My father eats very little. He tells me its not that hes not hungry he just gets full real fast. I've seen what he eats and its merely as much as a new born with there first set of teeth would eat. Is that normal?
2) should he be on a vitamine regiment? What are the best ones to use that will not interfere with his treatments? good vitamine E, C, coq10, amega3, maybe b complex? The oncologist said he wasnt a nutritionist so he wouldnt give me any advise. His weight is also an issue. I used to take brewers dried yeast with protien to bulk up when I lifted weights....would that be a good option for him?
3) HE has had a lot of bad things happening lately. He had a alergic reaction to chemo twice and has been back in the hospital several times (for almost a week each time) for spiking a feaver.... is that common?
One thing I understand is that when youre taking chemo you should drink a lot of water. Although he doesnt...at the most he drinks a few sips every several hours. Could this cause the temp?

Has anyone ever heard of zeolite? I heard its a natural therapy that "eats cancer like pacman"?

Douggie · May 2007

I forgot to mention. His cea levels have been going down...from 5500 when they first started down to 25....it did raise a little the last time to 27, but they gave him a week off of chemo and delayed some for the time he was having a reaction.

The oncologist makes it sound like he will never be off of chemo. My father was having trouble asking a question for the oncologist about the cea level. The oncologist wouldnt answer because he didnt understand what my father was asking. So I stepped in and asked....the ideal situation is to have the tumors shrink from the chemo so you can operate and take them out correct? he said that isnt an option.

Which brings to mind another question. FU-6, my father is on FU-5 right now. I heard of good responses from FU-6 anyone else?

Unknown · May 2007

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StacyGleaso · May 2007

I was wondering about your dad and how he was doing. I have heard mixed opinions about vitamins while on chemo. Some say yes, and some say no. I do know that he needs to increase the amount he eats. Is there a particular reason that he seems to get full quickly? Has anyone questioned whether or not there may be a blockage? A fever is common when the body is reacting poorly to something, in his case chemo. It's a way of signalling the authorities that something needs to be looked into. This may be one case where the cure is worse than the disease itself. I would have your dad speak with a nutritionist regarding what he can do to increase his calories safely. I would also tell that new wife of his to pack HER bags....time to week out the negativity in his life!

I think the huge drop in CEA is great. Often, CEA is not a good indicator of things, but I believe that a drop in that level speaks that something is going right.

I never heard of 6-FU. Maybe some veterans on the site will chime in on that one. I did 5 FU. (I was also stage 4, and that was over 5.5 yrs ago)

Keep us posted, and best wishes for things to get on track,

Stacy

vinny3 · May 2007

Your father has gone through alot and, of course, you with him. I suspect that the hospital has a nutritionist and it would be a good idea to ask for a dietary consult. Vitamins are a good idea. It is wise to ask the oncologist if there are any that shouldn't be taken during chemo. I have taken a multivitamin (Theragran), Vit B6, E, C, Magnesium, Calcium, Lutein, Beta-Carotene since my last surgery and took them during chemo. Water or liquid during chemo is very important. The suggestion for a supplement, like Boost or Ensure, if he continues to not eat is probably wise as well. Lastly, just getting some physical exercise, like going on little walks can be helpful physically and emotionally.

Thank you for filling us in on your father. We will pray that he starts to feel better and the stress will lessen for both of you.

****

KathiM · May 2007

Oh, dearheart, I'm sorry you and your dad are facing so much.

Would your dad consider talking to a counselor. Sorry if you stopped reading this reply, but I will go on....

With all that has happened with your dad, a certain amount of depression is not only allowed, it's VERY NORMAL...as far as the 'wanting to eat, just can't'...well, yeah, partly because his appetite has been depressed from all the reactions to things, but partly it's because he just doesn't see the point. Talking with a counselor that specializes in we cancer patients could help....I did, when things got dangerously close to me folding up my tent, as it were.

As far as hydration...well, I ended up hospitalized just to get me back to normal....I was only 'sipping', too....I was miserable, and couldn't seem to get on top of it.

Nutrition is key. You already know that. Babs' idea of baby food is a good one. It's small amounts, yes, but formulated to pack a nutrition punch for small tummies!

I found I could tolerate several (more than 6 daily) small meals, even just an english muffin would do, better than large ones. I also found that (my secret chemo weapon) scalloped potatoes worked well, as well as 'special fried rice' with chicken and shrimp.

As far as vitamins, I agree with Stacy....insist that his onc answer your questions, give you ideas. My first onc didn't even want me to drink green tea....the next one encouraged me to drink it...

I, too, at a low point, was MAKING myself sip Boost...one ounce at a time...high in energy, low in bulk...today...can't STAND the stuff-I mentally relate it to the dark period of my cancer treatment.

I am sending my best hugs,

Hugs, Kathi

lfondots63 · May 2007

Hi,

I agree with what everyone said. I went through the same thing with my father. You have to keep reminding them to drink a lot. Put a 20 oz bottle of water out for them and say that it needs to be done by the end of the day. If that is easy, go to two of them. I couldn't drink regular water. I had to have some flavoring. I know it is "bad" but I used crystal light to get the flavoring. The boost would help him also. Even one per day. If his onc doesn't want to give you/him ideas about vitamins, see if he would recommend a nutritionist. Like the others, I believe you need to do something to keep his body running while on the chemo that is depleting it. Also, small meals of ANYTHING he thinks sounds good. I would run to KFC for my dad if it sounded good to him. He wouldn't eat much but at least he was eating. I understand what you are going through and I will be sending good vibes that you find what works for your dad.

Lisa F.

shmurciakova · May 2007

Hi Douggie,
Glad for the update....of course we remember you and your father.
I agree as well with the others that your father should consult a nutritionist. I know he is at that small private hospital. Ask the doctor for his e-mail address so you can ask him questions. If they do not have one, please ask for a referral. They can help you both with the eating issue. I think I have said this before but it might be a good idea to seek out a naturopathic doctor (N.D.) in your area which specializes in cancer patients. They can help you figure out which supplements and vitamins he should be taking that will not interfere with the goals of his chemo treatments. I think it is excellent that his CEA has dropped so much, however, the fevers and allergic reactions concern me. It may be time for him to take a break from chemo and change his regiment. I have heard of others having allergic reactions to Oxaliplatin, but it is not "normal" and he may need to switch to something else.
As for him not being a surgical candidate, all you can do is get a second opinion on that matter. Where one surgeon says no another may say yes. What is the current status of his tumors and where are they?
Drinking water is very crucial to get all of those chemo toxins to flush out of his system. I know that many older people don't drink enough water anyway and have a harder time staying hydrated, so he must drink. Try Gatoraide if he won't drink water.
Good luck,
Susan H.

Douggie · May 2007

Thanks guys and gals.....
Well I may have mis stated the treatment.....
Its actually folfox 6 / SIRT
Im not certain about what all everything means.

First, If my father's cea level goes down even further doesnt that put him in remission?
The reason hes recieving chemo now is to keep the cancer from spreading further?...

Betsydoglover · May 2007

Hi Douggie -

I can tell you that while my recovery from colon surgery was very smooth, it took 4 months before my appetite returned to normal. And for the first 2 months I could eat almost nothing - a couple of bites, even of something I really liked, and I was completely full. I had some arguments with my husband over this, because he just couldn't understand. Neither could I, but I knew I was "full". My surgeon told me that this was not an abnormal reaction. I tried to eat multiple tiny meals, but even that was hard until I was about 12 weeks post surgery. The chemo impacted my appettite also when I didn't feel too well, but since my surgery was on 6/7 and my first chemo not until 7/18, the appetite suppression was apparently largely surgery related. It improved over time, even while I was on chemo.

Wishing the best for your father. But also guessing that this will improve and wanting to let you know that it is not an unheard of reaction to this surgery,
Betsy

hopefulone · May 2007

So sorry for all your dad and you are going through. Hydration is key and my hubby's oncologist says regular doses of vitamins wouldnt hurt . B6 complex was recommended. Hopefully things will start improving for your dad. I agree with others. Whatever sounds good to him to eat for a while should be tried so he'll get some strength back. My hubby is stage IV, no chemo definitive treatment length , hoping for shrinkage of the liver mets for surgical options, but they have shown some signs of shrinking, so there is always hope. ! Keep the faith, and be sure you are taking some time to take care of yourself also. I know how hard that can be. Prayers and good vibes being sent your way
Diane

My father

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