Cancer on top of ALS

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KimT

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I hope your oncologist works with your dietitian. The oncologist may not want you to have large amounts of soy. Can you add some raw coconut oil to whatever you are currently taking to increase the calories or is fat bothering your stomach?
 

Diane H

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I was in a similar spot 5 years ago with a diagnosis of breast cancer. I had a mastectomy and then had to decide about chemo. The oncologist was strongly for it because the cancer was stage 2, but I was on a vent and had pseudomonas in my lungs. Many people have pseudomonas and never know it. Pseudomonas is an opportunistic infection that goes dormant after antibiotics but will reactivate if the immune system is compromised. So since chemo lowers immunity, I figured I would have constant pneumonia from the pseudomonas if on chemo. Luckily my cancer was hormone receptor positive so I went with Tamoxifen tablets and radiation rather than full chemo. Now past 5 years with no recurrence.

None of this applies well to your situation, but remember that chemo may not be required and if it is, it is not as awful as it once was. And radiation is a real nuisance, being daily, but it is a possible option. Hang in there!
 

sleepy

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OMG. I cannot imagine. That's a whole new level of bad. My thoughts are with you!
 

mpnatx

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Harlo,
I had Prostate cancer and went though 39 radiation treatments with ALS. All gone now.
Best of luck to you,
Marty
 

harlo

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Went to Pcp today. He prescribed some morphine meds to take until appointment with oncologist next week. I pray it works. The pain goes up and down. Thank God I got the peg tube in April. My husband has become a pro at putting meds thru the tube. For those who are hesitating, get the tube before you really need it.
 

KimT

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Harlo,
Do you go to USF clinic? I just assumed since it is so close to Sarasota. If so, you can do a phone consult with people from your care team. The dietitian might be able to give you some suggestions.
Please make sure your oncologist consults with your ALS team before any decisions are made. I'm hoping and praying for the best possible outcome.
How is your caloric intake doing?
 

harlo

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I don't go to USF anymore since they were absolutely awful in returning phone calls. I know of two other PALS who had the same problem there. I go to Dr. Hanes clinic in Sarasota now. Caloric intake only about 900 calories.
 

KimT

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I'm sorry about the USF ALS Clinic. Did you try adding coconut oil to increase the calories? Is fat bothering your stomach? I was thinking about if you could get some organic almond butter, then thin it down and mix it in or, for that matter, even plain butter melted and added. Anything that didn't bother your stomach but added calories. Coconut oil would be my first choice.
 

Jeffreyp

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As for tube formulas, my wife use Boost Very High Calorie--not sold in store but can get from nestle and medicare pays. it is 530 calories in 8oz box. best to thin it a little with water. Also uses Liquid Hope-again have to get from web. Both need thinned out with water.
 

lgelb

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Harlo, you need more calories than that. Please consider having your husband blenderizing real food that you like. There have been numerous threads here on smoothies, soups, meat and more, or feel free to ask about possibilities with your favorite ingredients. Almost anything can be pureed.

Best,
Laurie
 

frankb

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Gee Whiz, Harlo, just when one thinks things can't get worse. Hopefully the pathology report will be favorable for you. You are in my thoughts and prayers.
 

harlo

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Have just returned from hospital. I was in emergency room waiting for over eight hours in very uncomfortable chair. I was having bad Pain under right rib whenever i tried to take deep breath or went to stand up. Doctors were concerned that it might be pneumonia or blood clot in lung due to previous surgery. Luckily, it was neither, just some inflammation of the lung lining. Having ALs in the hospital is tough, we had to fight with them about oxygen, and laying flat. They have no clue.

I did have a reaction to the iodine contrast that was injected in me for the EMG. Sick as a dog for about 45 minutes. Thought that might be the end. Anyone else have that experience? Now I'm home in own bed.......aaah.....
 

harlo

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Finally received pathology report. It is ovarian cancer. Doctor feels that there is a good chance they didn't get it all. Normally they would strongly recommend chemo, but because of the ALS, they are not sure. I'm going for a second opinion, and hopefully my neurologist will consult with the oncologist to decide what is best. Do I just try to enjoy the next few months or do the chemo and not only feel lousy, but possibly speed the A LS progression?
 

Nikki J

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I am terribly sorry. What an excruciating choice! I hope your doctors will be able to give you enough information that you will be comfortable with your decision. You will be in my prayers. Please know we will support you however we can
 

KimT

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Harlo,
I'm so sorry. I will pray. I hope your doctors work on this together and give you some choices.
 
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