Cancer on top of ALS

[harlo]

I decided to get peg in April, when I was still able to eat. Looking back now, nine months later, I'm so glad I did . It enabled me to have a pretty good quality of life until four weeks ago, when I was rushed to the hospital in excruciating pain. It appeared that I had a tumor explode in the pelvis. They gave me a complete hysterectomy, but they still don't know what kind of cancer it is. How can an ALS patient survive chemo? I've already lost ten pounds, and still have on and off pain. I would like to just go on morphine and fade away, but my husband would be devastated.

I tried to start my own thread a number of times, but it never gets posted. I feel completely isolated.

 

[Nikki J]

So sorry about your new issue. Please keep us posted

I have no idea why you were unable to post a new thread. It was not that they were moderated and disallowed. I have created this new thread for you

 

[Atsugi]

Harlo, how is your husband holding up? Is he able to support your needs?

Don't know why you're having trouble posting. I've never noticed any of your posts getting held up by the software here.

 

[Jeanau]

I decided to get peg in April, when I was still able to eat. Looking back now, nine months later, I'm so glad I did . It enabled me to have a pretty good quality of life until four weeks ago, when I was rushed to the hospital in excruciating pain. It appeared that I had a tumor explode in the pelvis. They gave me a complete hysterectomy, but they still don't know what kind of cancer it is. How can an ALS patient survive chemo? I've already lost ten pounds, and still have on and off pain. I would like to just go on morphine and fade away, but my husband would be devastated.

I tried to start my own thread a number of times, but it never gets posted. I feel completely isolated.

I am so sorry to read your post. I hope that you have someone in your life that can help you sort out your cancer issues from your ALS problems. This is surely too much to bear on your own!
Audrey

 

[Vincent]

One of the truly shitty things about ALS is it doesn't give you a free pass on everything else. You can still get cancer, have a heart attack, develop diabetes, or a whole list of other things. As if we didn't have enough to deal with.
Vincent

 

[KimT]

Harlo, I am so sorry to hear this. All I can offer you is my love, support, and prayers. Please keep us posted.

Kim

 

[harlo]

Thank you all for your kind wishes. My husband is doing his best, and of course is stressed out. It's been three and a half weeks now and we still don't have the final pathology report. I have an appointment with the oncologist next week. My primary doctor did some research, and found a few rare cases of ovarian cancer where the initial symptoms resembled bulbar als. Has anyone ever heard of this?
Another question- I've lost a lot of weight. The formula I take has only 230 calories. Is there one with more calories that will not upset the stomach? Since the surgery I been having gas pains.

 

[Nikki J]

My sister had to try several formulas before finding one that was ok for her stomach Compleat was what she ended up with. It has 265 kcal per container

 

[gooseberry]

I would suggest you find out exactly what type of cancer you have and what stage. I would then ask about the risk/benefits to taking the meds considering you have als. Moßt cheo drugs mess with some part of your immune system.

 

[scaredwifetx]

My husband uses High calorie boost. You can only get I online. We get it from amazon. It has 530 calories.

My prayers are so with you and your husband right now.

 

[maryhahnward]

I'm sorry you are going through this. If you go to an ALS clinic maybe you can ask to talk the social worker on the team with your husband. Sometimes it's easier to express important issues with a trained, third person to help facilitate the conversation.

 

[fionae]

Dear Harlo,

I am so sorry to hear what has happened to you.
I just cannot even imagine.
You will be in my thoughts and prayers.

I use a formula in my feeding tube that I like, and have
never had any problems with it upsetting my stomach.
(Of course, we are all different.)

It is called "Jevity 1.5", and has 355 calories per 8 oz can.

I hope this may be of some help to you.

Sincerely,
Laura.

 

[Ells]

Oh Harlo,

I just can't imagine what you're going through right now. As others say, you need to find out all relevant info.
My thoughts are with you hun.

Ells.

PS. I also take a 1.5cal per 1.0ml formula. Have you access to a dietitian? It's best not to lose weight.

 

[Nuts]

Oh Harlo, I'm so sorry. Balancing multiple diseases...the puzzle just gets harder and harder. The thing is, when you have competing physical needs, you just get to pick which one to attend to and there is no right or wrong answer. Don't, above all, ask "what else can happen?" The universe has a way of showing you. It sucks.

 

[chally]

Hey Harlow, your in my thoughts & prayers