Some Obversations about Having a Loved one with Cancer

[Mike 03]

I know I'm not alone here when it comes to having someone you love who is suffering from cancer, but today was one of those major days that you just have to talk about. Also, I learned something interesting about clinical trials.


This is an amazing community, and I have appreciated all of the kindness that has been expressed in regards to having someone you care about who has terminal cancer, or losing someone to terminal cancer. It's a terrible thing, and a traumatic thing.

I just have to express my feelings to someone tonight. Even though I spoke for hours with my sisters, for some reason that was not enough.

My father responded very well to his initial chemo. He did not go into complete remission (CR), but he went into nearly complete remission (nCR). Then his doctors put him on a new therapy and he appeared to do well on that. But he didn't like the steroids, so his doctors removed them from his regimen, and because of his renal insufficiency and kidney issues, he was moved down on his chemo quite a bit. Then his IGA shot up from two hundred to four hundred, and two weeks later it was back up over a thousand, and he had an M spike again. We learned this today.

So.. It's just a terrible day. I wonder what is next? What can we try? What can we do?

This is really the main point of this post:

I've spent the last few hours researching clinical trials, and the most interesting--albeit confusing--thing that I've discovered is that one drug can have four names.

I was trying to find clinical trials for a drug known only as "SAHA", and it turns out that it is also called "Zolinza," "Vorinostat," and "Oral Suberoylanilide Hydroxamic Acid."

So if you are trying to find a clinical trial for a particular drug for a loved one, be prepared for the possibility that it has many names.

Google can help, but also knowing what "family" of oncological drug it is can help too. In my case, the drugs I was looking for was also called an "HPAC", and in prior instances I had been looking for a proteosome inhibitor.

It's a shame that it is so hard to navigate this horrendous jungle. I just offer my experiences for what they are worth. One of my sisters has a best friend who is a psychiatrist, and she said it is not unusual to feel like you are losing your mind when you are losing some one you love to disease. That gave me some relief.

[Maat]

1. You and your dad are in our family's positive thoughts and prayers ...

hang in there.

[SharonRB]

2. My thoughts and prayers are with you and your family

I lost my mother to cancer last April -- she was diagnosed in January and just as she was getting ready to start chemo, wound up with sepsis and was on a respirator for 10 days. They gave her a week to live at that point. She got through the sepsis and then was in hospice at home for two months -- there was really nothing else they could do for her, so she never did go on the chemo.

I know this is a difficult time. Stay strong.

[cynatnite]

3. Voice your concerns to the doctor...

ask him about clinical trials and any other questions you might have. I think you will find far more comfort and reassurance over these kinds of issues with someone who knows your father's conditions.

Here at DU you will get lots of emotional support. I wish you and your family the best.

[Gwendolyn]

4. There is only one thing I can share.

There was no hope for my mom really. Three months and that was it. The most important thing you can do, and what you will always remember (no matter how many more years your dad has) please talk to him. Talk to him about everything... stupid little lovely memories, tiny things that were great in your family. Let him talk if he wants to... sometimes when people understand they may leave this planet, they want to say things but do so in a round about way. Make him feel safe and loved. What you're doing is wonderful, but you needn't always be the strong, resourceful one. You can also be the kind, loving son who just holds your father's hand.

[Lucinda]

5. I'm sorry its been so difficult! Thanks for sharing the drug information

I never ran across that when I was researching my cancer treatment. It's not surprising, I often found that things weren't as standardized as I expected them to be. I was unable to tolerate one component of the R-CHOP I was supposed to use, so they had to make an adjustment, but it was easy to research my components.

Will be keeping your family in my thoughts...

[SoCalDem]

6. It must be very frightening..and daunting to have to do all the research on your own..

:hug:

It was not cancer we dealt with but all the years of our son's treatment, always involved "experimental" surgeries with 1-5 odds most of the time.. Every time, we beat ourselves up over "what if we make things worse"? or "What will we say to him when he's older and asks us why we tormented him so much?" or "why didn;t we try X ot Y"?

Truth is..you just never really know, and the unchosen choice will always haunt you, no matter which way you go..

In the end we are all just buying time...and we never know how much time or what quality the time will be, or even if the cost is too high or when to stop..

:cry:

I am so sorry you have to be having this dilemma, but just keep asking the questions and trying all you can..No matter what happens youwill at least know you did all you could..

[Sonicmedusa]

7. I lost my brother to cancer when he was a 36-year-old grand father of two.

I am sorry for what you are navigating now.
((( HUG))))