Mast Cells = Leukemia?

[tpapik]

So I saw an illumonologist today, and because of my stomach issues and having an adverse reaction to morphine (a nice rash) she came out and told me this "I think you have mast cell leukemia" we are going to check your Tryptase levels" and if you have mast cell leukemia- that is a poor prognosis to live...]

... can you say

im crying like crazy ?!

wtheck

[issie]

Yeah, you can say that and it is a scary thought.

I'm not sure that people realize there is a possibility of cancer with mast cell issues. It is called MPN (Myeloproliferative Neoplasms). You can actually be checked with genetic testing to see if you carry the gene for this. (I actually do carry the gene.) And then there are some other test that have to be done to see if the gene has been activated C KIT and JAK 2. I was told by the lab when my genetics came back positive for the MPN gene --to have the additional testing done. I have not. I don't seem to have any of the symptoms of an activation for the cancer type except for having Mast Cell Activation Syndrome. I don't know - that I really want to know to tell you the truth. My doctor thinks we just wait and see and if symptoms start to present for the problem --then for me to go on with further testing.

Just take a deep breath and realize that there are more testing that needs to be done and you may not have this at all. Even with me having some indicators --I'm not freaking out or losing sleep over it. I just try to work on the symptoms of MCAS and go each day as it comes.

There are actually more people on this site that are undergoing testing for it right now. So, maybe they will chim in on what is going on and what for you to expect. There are forums that you can join with others that have this and it is a very supportive group of people and they are living life ---coping with this problem.

It will be okay. You don't know that you have it. There are things that can be done for it, if you do. We can't determine what genetics we will get --but, we can support what we do get and try to work with the defects. Things can be reversed and science is proving that!

Issie

[Aimes]

From what I've read, Mast Cell Leukemia is extremely rare. I wouldn't think a reaction to morphine and GI problems would automatically point to leukemia as those can also be symptoms of MCAS. It will be good to rule it out though. Deep breaths, happy thoughts. I hope all goes well and you get good answers!

[issie]

I wouldn't think a reaction to morphine and GI problems would automatically point to leukemia as those can also be symptoms of MCAS

I was thinking the same thing. Why would they jump to that conclusion so fast and without any testing. And it's the weekend. That wasn't very nice of her to do that!

Lots of people have issues with morphine and stomach issues. That's part of having POTS!

Issie

[ophelialit]

I agree completely! If stomach issues and chemical sensitivities/reactions are indicative of Mast Cell Leukemia, then I've apparently had it for 20 years. I swear...sometimes doctors SPEAK without THINKING first...hang in there, and keep us posted!

[Katybug]

I agree with the other folks. I have GI issues from entry to exit and all the way in between and my body also doesn't do well with morphine and I have mcas but I've never felt like that means I will eventually develop a mast cell lymphoma. It is a possibility but it's very remote. I'm feel like I'm more at risk driving in my car and being injured in an accident. I don't mean any offense to your doctor, truly, but could she know just enough about mast cells to remember the worst case scenario but not enough to know that there are a spectrum of non-fatal disorders that involve mast cells that would be more likely ?

[Angela]

that's crazy that she said that. even leukemia patients, there dr.'s tell them that hope and perseverance and laughter/humor is sooo helpful in conquering a disease such as that. ignore those words, just get wait for your test results to RULE IT OUT!

[Ash]

I am sorry Tapapik : ( if it helps I don't have MCAS nor any symptoms indication I have it and I have severe GI issues and react badly to morphine (as well as most medications) when I was in the hospital last year they had to switch me off of morphine because I would also get a rash and severe headache whenever they would try and give it to me. So your not alone, think happy thoughts. our bodies are just so weird sometimes that it is always hard to know when it is something else or when it is "just" POTs. Let us know what you find out. : ) Ash

[boymommy3]

I am so sorry that your doc said that to you! Sometimes they can be so heartless. I think they forget they are talking to REAL people!

Also, I do not have MCAS but I am allergic to Morphine and have GI issues as well. I know it's easy for us to say don't worry about it after someone has put that thought into your head, believe me I have been there, however, I will say it again. Try very hard not to worry about it and just wait until you get your labs back. It just doesn't sound like your doc is using good common sense here.

Just a story of something stupid a doc said to us once....

Our oldest son has a CHD called HLHS (Hypoplastic Left Heart Syndrome) and has had multiple open heart surgeries and catheterizations. Once after his second open heart, he wasn't doing well and no one could figure out why. We were very worried about him, to say the least. This second surgery was #2 in a series of 3 that he would need over a period of about 4 years. So after discussing our concerns with his surgeon and asking basically what they were going to do, he just looked at us and rudely said, "Well, we certainly can't to the 3 surgery yet!"

Honestly, I was ready to smack him and I was so sad at the same time. We clearly knew that something was wrong and they were missing it (but were in no way implying we thought they should do his next stage at that point), and I think he was offended by the fact the we were questioning him. It was such a rude and heartless thing for him to say and especially in the manner that he said it, when there were parents who were standing in front of him afraid they were losing their 6 month old son! I think doctors are taken aback when they run across people who know a little bit about what they are talking about and don't just blindly follow the doc where he wants you to.

And, btw, we did turn out to be right and got another doc that we had become close with in PICU to look at him and he figured it out all was good. However, it could have been a completely different story if we hadn't gotten the help when we did.

Hang in there!

[DoozlyGirl]

tpapik,

How horrible! I totally agree with what's already been posted. What in the world gave your doc that impression??? Morphine is often considered the most degranulating medicine out there. Even healthy people have issues/adverse reactions with morphine. Mast cells are readily found lining the GI tract and any other tissues that interface with the environment, such as the skin and lungs. Mast cell neoplasms like leukemia and lymphoma are EXTREMELY rare, like only a couple of hundred cases on the books rare. Most of the folks on several sites I'm on have issues with both, so I hope this gives you some comfort.

The first step is a tryptase and if that falls below 20, then systemic mastocytosis (SM) may be ruled out. Once SM is off the table, then MCAS should be explored.

Take care,

Lyn

[tinkerbella]

Hi, I'm really sorry that you are having a difficult time right now. I know it is hard, but try to take it one one day at a time. The doc was telling you what he or she had to. I know they told me that my level was climbing high and I could get cancer. I also have problems with morphine and itch like crazy. My stomach issues are finally being addressed.

Every single one of us are FIGHTERS here, so just cancel out any negative thoughts planted by anyone and start to move forward to fight to LIVE! Nothing has been easy so far far, but we have made it! We will be here for you no matter what. All of us who need our trypase levels checked, this is a reminder to follow up with our own doctors. May you stop worrying and waiting till you get your results. Meanwhile we can all pray for you sweet one. Keep us posted. ((((Big Hugs))))

[Kellysavedbygrace]

Seriously?

Unless there is a really good reason that this immunologist gave beyond what you've stated above (such as a bone marrow biopsy of stained proliferative mast cells, or severe organopathy of your liver, spleen, etc) you need to fire this doctor and find someone else to help you.

I am so sorry to read this. You should not have been treated this way and I hope all the comments above will help to realize that this weak connection to MCL is demonstrative of this immunologist's ignorance.

I do have MCAS and have studied the various mast cell disorders from the perspective of a patient.

There are many forms of systemic mast cell disease and the most common is Mast Cell Activation Syndrome (MCAS.). This is where the mast cells are mutated and degranulate improperly (either spontaneously or when triggered by something). MCAS is not well known yet as most immunologist still only recognize Systemic Mastocytosis (SM) as defined by the World Health Organization (WHO).

Research is currently underway to better diagnose and eventually treat and educate physicians about MCAS.

SM is the most well known form of systemic mast cell disease. It is often diagnosed using the WHO

criteria which includes a bone marrow biopsy demonstrating the proliferation of Mast Cells in the marrow and elevated tryptase levels among other biomarkers. SM is subdivided into 3 categories (Indolent, Smoldering and Aggressive). The vast majority have Indolent SM which is considered a benign hematologic condition. In some cases the condition can develop carcinoid features which then is suspicious for the more malignant forms of SM which are usually associated with some degree of organ failure (liver, spleen, etc).

In less than 1% of all Systemic Mast Cell Disease patients MCL is found. Many times this is discovered during the autopsy because this form is so aggressive. It mostly develops independent of SM or other forms of Lukemia but can in some cases evolve from aggressive SM or Non- mast cell Lukemia. Normal total tryptase is about 6 micro g/l. In MCL cases tryptase levels are found to be elevated to be in the

multiple hundreds. (meaning the mutated mast cells are taking over the bone marrow.).

Systemic Mast Cell Disease is rare. But MCL is very, very rare. Why your doc would even mention this without an elevated tryptase level is beyond me.

If I were in your shoes, I would call or fax a question back to this doc about why they suspect MCL. If they do not give you more than the flushing, GI issues and reaction to morphine then you might want to change docs. Yes, of course, get your tryptase level checked but my bet ( just an educated guess from another patient) is unless you are experiencing liver failure or an enlarged spleen that you are not telling

us about you are not dying anytime soon.

Again, so sorry this happened. Keep us posted on what you find.