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Comment by Christine on December 18, 2009 at 8:44pm

Additionally, I wanted to add that I am an ALPS carrier, but do not have ALPS. My older son has the same diagnosis. My middle son has ALPS, but doesn't have cancer and then Cameron of course got all the bad stuff you can get from this. Besides cancer the ALPS patient may exhibit cytopenias: low RBC, low WBC and low platelets, which are not explained for other reasons. Also two other big signs are unresolved, persistent, enlarged lymph nodes and an enlarged spleen, which Cameron exhibits both. Hope this helps.

Comment by Christine on December 18, 2009 at 8:41pm

Hello Suzanne,
Cameron was tested specifically for ALPS. What they see in the blood work is double negative t-cells. If they see that then they will test further. I remember an initial blood test showing some type of marker for the double negative T-cells. A normal person would have a marker of 0, my son had a marker of 1.0 this doesn't sound like a lot,but in medical terms it is quite significant. I think it would be in your best interest to follow up with this line of questioning. It only involves blood work. If they determine that ALPS may be present they will forward the information to the NIH and then they will take it from there. Don't let your doctors discourage you from this and they should be able to explain why or why not they think your daughter does not have ALPS.
Good luck and feel free to post any more questions. So thankful that your daughter is cancer free. Every month it gets a little bit easier.

Comment by Suzanne Wozniak on December 15, 2009 at 2:38pm

Hello, my name is Sue...my 13 yr. old daughter is 4 mths. off treatment for Anaplastic Large Cell Lymphoma (Non-hodgkins). She completed a one yr. protocol and is doing well. I am so glad Shelly started this group as I am always looking to share with other parents.
Christine and Heather, your posts interested me very much. When my daughter was dx. the Dr's thought she could have ALPS. The Dr. says testing was done and that seeing a specialist was not neccessary, i believe labs came back negative , but during that time it was all so overwhelming I don't even remember seeing any lab reports or anything. Autoimmune runs extremely high in my family and I have always been concerned since the initial conversations about ALPS. If either of you have any info or suggestions to share I would be grateful.
Christine, I am so glad your son Cameron is 18 mths free! I will keep you in my thoughts! Heather, bless you and your son, I hope his diabetes stays under control and glad he is thriving!

Comment by Christine on December 5, 2009 at 10:09am

My name is Christine. My son Cameron had stage 4 Hodgkins at age 5. He is cancer free for 18 months. He was recently diagnosed with ALPS, which is a genetic disorder. This syndrome causes a 50% increase in incidence of lymphoma. Would like to share any info with others who have ALPS or may be concerned their child has ALPS.

This diagnosis came about because he was having hot PETs and they did a biopsy which was negative for cancer. We have met with the ALPS team at the National Institutes of Health and they were helpful in easing my mind about a reoccurence of cancer. The relapse rate can be as high as 25%, so it is a real concern for us.

Comment by Heather Endresen on January 28, 2009 at 5:17pm

My son Reese is in remission from Lymphocyte Predominant Hodgkin's Lymphoma...he was just recently diagnosed with type 1 diabetes (an auto-immune disease where his own body attacked the cells of his pancreas that produced insulin...he is now insulin-dependent, but thriving, Thank God!). We will be doing some special blood work to screen for Autoimmune Lymphoproliferative Syndrome (ALPS) in a couple of weeks. People with this have an increased risk for auto-immune diseases and lymphomas. Just curious if any of the lymphoma fighters have ever come across ALPS before.