iowagirl

One more piece of info…..the govt clinical trial number is NCT02160041 for Solid Tumor Hemotologic . I looked through the requirements/exclusions and nothing on there for platelets I could see on a quick read through. You have to have a progressive cancer…..and for which other treatments are not working ….but off chemo for at least 4 weeks before starting the trial.

Julie

Duke…Marion…..I’m not sure what the trial is called that Patty is doing at MD Anderson. I do remember reading that her phosphate levels had to be under a certain number. I will check inbetween baking and thunderstorms today to see if I can find anything on Patty’s blog to identify the trial. I remember reading that she had to follow a pretty specific diet…low phosphate, which sounded restrictive, but manageable.

Julie

Duke….that just sucks. I guess I see their reasoning….but it would have been nice to know that upfront. Yeah…..big choice….diarrrhea or neuropathy. That local onc also just seems like they don’t want to bother with learning anything more……..just use what they learned in med school and slide eventually into retirement on that. Good grief.

I know it’s quite a ways…and I don’t know what the requirements are…but what about the trial at MD Anderson that Patty Stoltz Cockeran is doing (and some others)? Do you qualify for that?

Julie T.

Serena,

I had pain in my abdomen during chemo ….close to the incision site. It would hit suddenly and just as suddenly be gone. It could be chemo making your mom more sensitive, or it could be nerves trying to heal post surgery. I had transient pain around the main incision off and on during chemo and for a while after, and then it stopped and hasn’t come back.

I would suggest that you go with your mom to her next appt if she will let you, and bring up this issue that your mom is concerned that the CC is back …due to her feeling this abdominal pain. Sometimes, unless we present it as a real concern, I’ve found that doctors tend to pass over a question and don’t explain fuller. They don’t see a problem, and don’t spend the time to full explain why unless we press them.

Julie T.

Emma,
Welcome to the CC foundation boards where you will find a very nice bunch of people. None of us want a reason to be here, but thank goodness for these boards.

Your mom as a patient and you as a caregiver, deserve to have more information from your doctors than just, “Google it on the interenet.” At the very least, that is lazy on their part and certainly not giving your mom the full information about her condition.

I strongly suggest getting another opinion, if possible, about your mom from a doctor who isn’t just blowing her off. There may be treatments available for your mom which will prolong her life considerably, but you need to first know the extent of her condition and then find out what is available. It doesn’t sound like your current doctor is willing to spend any time to explain any of this.

The cough: Duke is right. The cough could be a sign of pneumonia, or it could be a sign that the CC has metasticized to the lungs. If it is the former, it needs to be found and treated and if the latter, the doctor should have told you and your mom the full extent of her illness. Your mom tiring faster when walking may be due to problems in her lungs. That needs to be addressed.

Eating: Again, Duke is spot on…..a good appetite is essential to your mom maintaining her strength and being able to deal with the CC.

Hopefully, Gavin will be along soon to help you maneuver through the health care system and give you some suggestions.

Julie T.

Kris….do what you have to do…..get through it and on to what comes next. Even if it turns out to be another type of cancer like Lymphome, Mark may change his mind about treatment. The “curability” of a Lymphoma may be far better than what he might expect. Back in 1984, my dad got large cell lymphoma, a rare, aggressive cancer, and as aggressively fast as it was, it also was known to respond to chemo very quickly and well. And while it seems the doctors “think” it is a cancer…..the percentages aren’t close to 100% with the exudative effusion. I don’t understand how they can ignore the probable infectious cause with WBC, but maybe they are just investigating all possible things in an effort not to assume anything , miss something and be wrong. As for what you have and haven’t shared with others about the whole picture of what is going on…….You know what your family can handle and what they can’t…..and right now, if this is the way YOU can get through this better…then follow your gut and let the chips fall where they may. You’re certainly not going to hell . LOL Meanwhile…..I’ll be saying an extra prayer for you and Mark tonight….and until this is resolved.

Julie T.

Kris…..I didn’t have much time to do anything else, so decided to do some research on the web now instead of later.

Causes I found other than cancer for exudate type effesion:

Use of Drugs:
Methotrexate, Procabazine, Cyclophosphamide, and Bleomycin. I did find a couple instances of Oxyplatin causing pleural effesions
congestive heart failure,
Pneumonia
Pulmonary embolism
Low serum albumin

Exudate type does have some risk of being a malignancy, but not 100% so .

There is a very low association of pleual effesions with gastro -intestinal cancers. There will may be some risk, but it is indeed rare.

Since Mark has a “touch” of pneumonia, it’s very possible that is the cause of the effesion…unless he had a pulmonary embolism that they didn’t catch on the CT.

Since the CT was just clear so short a time ago, it would seem reasonable to think that this is something associated with what is currently happening to him. But, I know you aren’t going to feel okay about all of it until the docs get to the bottom of it.

I’ll keep checking.

Julie T.