Mds And Lumps On Neck

[Marixyz]

My dad still has the MDS and isn't getting any better. He now has these terrible lumps/growths on his neck. He had one biopsy, by an ear, nose & throat doctor, but they didn't find anything. My dad finally agreed to go to the Roswell Cancer Institute, nationally known facility located right here in Buffalo, NY. They will do a cat scan next week on the lump, and he also shows some sign of something going on in his lungs. I'm on the verge of crying every second, and to see my dad steadily declining in his health is unbelievable. He went from 120 mph last year to like 12, and our family is in a state of disbelief. Can somebody please tell me why there are now the lumps and growths in his neck area? He had a bone marrow scan a few weeks ago, and the disease hasn't progressed to leukemia, in fact, the RBC have gotten a little better. He gets at least 1-2 pints of blood per week to stay alive. We're worried sick. Is there any hope here??????????? Please somebody, help!

[Ruth Cuadra]

Marixyz,

I'm glad your Dad has agreed to go to Roswell. It definitely sounds like he needs a more detailed review of his situation.

I have heard of painless lumps in the neck, underarm, stomach, groin etc. as being symptomatic of MDS. The National Cancer Institute lists such lumps as one of the possible signs of childhood leukemia or MDS. They may be disturbing to see, but I hope it helps to know that they are not so out of the ordinary with an MDS diagnosis. Are the growths causing your Dad any pain?

Let us know what the doctors at Roswell say.

Regards,
Ruth

[Marixyz]

for your reply. No the lumps cause no pain to him, but they are unsightly and scary. I think of lumps as meaning the big "C" word, but we haven't heard that yet. YES, Roswell seems very thorough and I'm glad he finally decided to go. Perhaps had he not been so stubborn and gone back in September when he was first diagnosed with MDS, he would be in better shape today.

He is continuing to get blood transfusions, at least weekly, and there are now some side effects, i.e. he gets the chills real bad at night and a low grade fever. What causes this?

I so hate this disease and want my "old dad" back.... there's been nothing harder in my life than watching him turn from someone so feisty and full of life to someone who can barely walk across the room without being out of breath. I have all of my friends praying and trusting God for healing and answers, there doesn't seem much of anything else anyone can do to help him. My mom takes care of him 24/7 and I'm sure it's exhausting for her after all these months.

Please stay in touch - your response made me feel a lot better hearing that the lumps could be associated with the disease. I hadn't read that anywhere else.