Another problem

[Al's Wife]

After we got up this morning, Al showed me the inside of his mouth and he has these big blood clots (I guess you would call them) inside the cheeks of his mouth on both sides. They look awful and I thought I was going to faint, although I didn't let him know that. I don't usually have a weak stomach. I guess it was just seeing them and knowing that it also is a sign of how his condition is deteriorating that it got to me.
He already uses the Biotene Mouthwash. Is there anything else we can do that might help or keep them from getting infected, which I've read on the boards sometimes happens? We see our doctor at Emory on Wednesday (and I'm really glad now we made the decision to go back there for our local care) and we'll talk to him about what to do then, but just wondered if the meantime if we could be doing something else.
Thanks,

[PattiDean]

Oh Linda, so sorry to hear about Al. That has to be awful for you.

Do you think you should call Emory on Monday and let them know about Al, maybe they can see him sooner.

I know a few weeks before we found out Dean had MDS, he developed two large purple lumps beneath both of his armpits. They were larger than a half dollar. Dean said he knew they were there, but they didn't hurt, still it alarmed both of us. Dean's family doctor said it was an infection, we now know it was related to the MDS. I suppose it is a good thing we didn't know this at the time.

Please take care and let us know what happens. It hasn't been going very well for you and Al, you should both be concentrating on Al's health, not with finding an oncologist that will work with you and Moffitt. I wonder if the stress is also a factor in Al having a set back. It shouldn't be this way, so very sad.

You and Al are in my thoughts and prayers. Lots of (((hugs))).

God Bless You both!

Patti

[ssdavi71416]

I don't know if this is what happened to Al but when I drank through a straw it tended to produce large blood blisters in my mouth. I am also in the Atlanta area and go to Emory.

[Birgitta-A]

Hi Linda,
Is it really blood clots - not blood blisters. Blood blisters are not dangerous. They only show that the platelets are low or dysfunctional.

I have dysfunctional platelets and have had quite big blood blisters in the mouth since dx regardless of platelet count because I often manage to bite myself when I am chewing an apple or something else that is hard.
Kind regards
Birgitta-A

[Al's Wife]

Thank you so much for responding, Birgitta, and others too. I guess I just kind of panicked when I saw them at first. But, yes, I suppose they are what you would call blood blisters but they are real dark. They don't seem to be bothering him and he says they don't hurt, but they look awful.
I need to learn to take a deep breath and try not to get so upset each time something comes up, and I guess I could if it were me it was happening to. But when it's the one you love the most (as Beth says), it's really hard.
Thank all of you for just being there and being so supportive.
I did send off an email to Moffitt just to make them aware of what's going on, but I don't expect an answer until Monday.
Thanks again,

[Al's Wife]

Wow, our doctor from Moffitt responded on Saturday - that's a first from any of our doctors! He said it would be okay for Al to take the Amicar (the medicine to help with clotting) even though he's on the clinical trial. It was reassuring to get a response from him today, even though I felt better after reading on the forum about others who have had problems with blood blisters in their mouth.
Thanks again to all.

[PattiDean]

That really says a lot for Moffitt that they answered you today!

I am like you Linda, I panic first, I think that is my middle name!

Please let us know what happens and how you and Al are doing. Good Luck at Emory, sounds like you are going to be in good hands.

Hugs!!!!

Patti

[bebop]

my Dad had those a couple of times. his dr said they should go away on their own but yes it is a sign of plts being low.

[Sally C]

Linda,
That is so wonderful that you received a response from Moffitt on Saturday. I know that gives you and Al an added measure of security. Things don't always happen just Monday through Friday.
I hope the rest of your week-end goes well.
Take care and God Bless,
Sally

[slip up 2]

Linda...you are Al's advocate...it is ok to get in a flap and worried about stuff....it is just natural...
Don't ever forget the Dr's rely on you and your expertise as much as you do on them...

[milliken2]

Linda,
Are your sure these are clots and not mouth ulcers? Has Al been eating a lot of acid things lately - like fresh tomatoes? I iknow Earl is suffering with the ulceration on the roof of his mouth, but he also has one on the inside of each cheek. The Dr. said it could also be caused by the cumulative effects of the chemo. I have started to give him a Tums twice a day to keep the acid in his system down, and of course the extra calcium in it doesn't hurt. He said they are getting a little better - so I am not sure which one is really working - but it can't hurt. Hope Al gets to feeling better.

((((HUGS))))
Beth

[bebop]

you can really tell the difference in what looks like blood clots and ulcers. Dads looked horrible almost black. dr confirmed it for us. nothing they could really do about them. I am sure ulcers also come from chemo but Dad never took vidaza or anything.