1. < Blood Cancers & Disorders

JAK2 Mutation and enlarged spleen: What might it mean?

Posted by queenkafey @queenkafey, Oct 25 1:28am

Good morning,

I've been lurking here a few weeks but now would love some advice.

To cut a long story short, about 18 months ago, I was found to have an enlarged spleen doing an unrelated abdominal ultrasound. I was referred to haematology, and a blood test from January this year showed I have a low level of jak2 mutation. This was repeated 2 months ago, and I just found out last week that it was detected again on this more recent blood test.

I'm not seeing my consultant for another 3 weeks, which just feels like so long.

Obviously I googled Jak2 and I know what this could mean for me, I think I'm looking for other people's experiences at this stage? Is it likely I have an MPN? I have struggled with my health for so long now, and been dismissed by so many, I wonder if this could all be linked. In particular the chronic fatigue. More recently, weak limbs, lights off body aches and pains, general weakness, cognitive issues, dizzy spells.

I need to get ready for work now, I just wanted to finally say hello and hopefully get some advice.

Thanks so much

Lisa

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et1055 | @et1055 | Nov 1 11:20am
In reply to @arecchie "Sorry you are going through this time of uncertainty, Lisa. The uncertainty is worse than the..." + (show)
@arecchie

Sorry you are going through this time of uncertainty, Lisa. The uncertainty is worse than the diagnosis! Your doctor may want to do a bone biopsy to see if there is any scarring in your bone marrow. That is normal, so don't freak out over it.

I've been on Hydrea for 3 weeks now and had no symptoms. Yesterday, I was so exhausted, I couldn't move out of the recliner chair for 6 hours. I had to will myself into the bedroom. My face became extremely flushed and red on the left side only.

Today, everything feels better and back to normal. Everyone's journey is different, but the best advice I can give you (that was passed along to me on this thread) was to drink tons of water throughout the day AND when you take your Hydrea, put water in your mouth first and then tilt your head back and drop the capsule (directly from the cap - NO TOUCHING) into your mouth and swallow immediately. In this way, the pill won't linger on your tongue for a second or two. It is such a potent pill that holding it in your mouth for a few seconds can cause irritation to your tongue.

Remember, the warning labels on Hydrea are not kidding when they state to not touch the pill and if you do, scrub your hands immediately.

Now, it is important to remember that Hydrea is usually the first line of defense for PV. Sometimes, doctors will choose to put you on Jakafi or another chemo, depending on the severity of the disease OR due to your intolerance of one of the drugs. It's not unusual to be switched around until you find the drug that works for you.

Hydrea, so far, hasn't been bad for me, but it usually takes about 6-8 weeks to determine the fallout for each individual. Also, some people never have any side effects and then they come 6 months later, out of nowhere!

Know that this disease can be effectively treated. You will be on the chemo for the rest of your life, but you will be alive and once you get acclimated to it, can live a normal life. Please get online and look at PV diets. Sugars, additives and other things can make it worse. Adjust your diet accordingly.
Best of luck to you.

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Oh, so that may be what is going on with my tongue!!!
It has been very sore and painful for over a month. But there are no signs of blistering or sores.
Have other people had this problem???
I will try the ‘water In my mouth first’ trick.😊
Thank you

REPLY
2 replies
nypara66 | @nypara66 | Nov 2 6:22am
In reply to @et1055 "Oh, so that may be what is going on with my tongue!!! It has been very..." + (show)
@et1055

Oh, so that may be what is going on with my tongue!!!
It has been very sore and painful for over a month. But there are no signs of blistering or sores.
Have other people had this problem???
I will try the ‘water In my mouth first’ trick.😊
Thank you

Jump to this post

Yea it can make it feel swollen and tender. Also your teeth and gums will just hurt out of no where and then be fine so don’t just run to the dentist. I’m trying the water in the mouth but haven’t mastered it yet lol Hang in there!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 2 8:54am
In reply to @et1055 "Oh, so that may be what is going on with my tongue!!! It has been very..." + (show)
@et1055

Oh, so that may be what is going on with my tongue!!!
It has been very sore and painful for over a month. But there are no signs of blistering or sores.
Have other people had this problem???
I will try the ‘water In my mouth first’ trick.😊
Thank you

Jump to this post

@et1055, As others have suggested make sure you put water in your mouth first, then swallow the med, followed by a full glass. Brush your teeth or at least flush your mouth with water or milk after.
You can also try warm salt water swishing. 1/4 teaspoon of salt and baking soda in an 8 oz glass of warm water. Take a swig and roll around in your mouth for 1 minute and spit out. Repeat. It is soothing to the tissue.

Another soothing remedy is to take 1 tablespoon of extra virgin coconut oil in your mouth. Hold it on your tongue to let it melt then swish in your mouth for up to 20 minutes! Do not swallow this!!! Keep swishing through the teeth, around cheeks, over tongue. Then spit into a tissue. Don’t put it down the sink it will eventually clog the drain. Coconut oil has antibiotic/antifungal/antimicrobial properties and helps promotes healthy gums and oral tissue. It helps with burning mouth syndrome.
Have you tried any of these?

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1 reply
et1055 | @et1055 | Nov 2 12:06pm

Hi Lori, thank you for the tips. I have not tried any of these—but will.😊
When I was to see my dentist this week, I had her check my tongue. She suggested alpha lipoic acid – – from a health food store – – for burning mouth syndrome. I haven’t had an opportunity to pick this up yet, so will try your suggestions first.

REPLY
et1055 | @et1055 | Nov 2 12:13pm
In reply to @nypara66 "Yea it can make it feel swollen and tender. Also your teeth and gums will just..." + (show)
@nypara66

Yea it can make it feel swollen and tender. Also your teeth and gums will just hurt out of no where and then be fine so don’t just run to the dentist. I’m trying the water in the mouth but haven’t mastered it yet lol Hang in there!

Jump to this post

Thank you😊
There is so much to learn!!
I sure appreciate all the tips on this site. The Cancer Clinic doesn’t give Any of these tips. I found that when I was going through Ovarian cancer as well – – other Patients gave tips on how to survive the side effects of chemo — So helpful😊

REPLY
nypara66 | @nypara66 | Nov 3 5:49am
In reply to @loribmt "@et1055, As others have suggested make sure you put water in your mouth first, then swallow..." + (show)
@loribmt

@et1055, As others have suggested make sure you put water in your mouth first, then swallow the med, followed by a full glass. Brush your teeth or at least flush your mouth with water or milk after.
You can also try warm salt water swishing. 1/4 teaspoon of salt and baking soda in an 8 oz glass of warm water. Take a swig and roll around in your mouth for 1 minute and spit out. Repeat. It is soothing to the tissue.

Another soothing remedy is to take 1 tablespoon of extra virgin coconut oil in your mouth. Hold it on your tongue to let it melt then swish in your mouth for up to 20 minutes! Do not swallow this!!! Keep swishing through the teeth, around cheeks, over tongue. Then spit into a tissue. Don’t put it down the sink it will eventually clog the drain. Coconut oil has antibiotic/antifungal/antimicrobial properties and helps promotes healthy gums and oral tissue. It helps with burning mouth syndrome.
Have you tried any of these?

Jump to this post

Swish coconut oil in your mouth for twenty minutes? That’s a long time! I can say with certainty I’d gag or get tired standing there lol I think the medication still causes issues in our mouths but some of these techniques may lessen it. Any suggestion is appreciated for sure though. Chemo pills ain’t no joke!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 3 7:35am
In reply to @nypara66 "Swish coconut oil in your mouth for twenty minutes? That’s a long time! I can say..." + (show)
@nypara66

Swish coconut oil in your mouth for twenty minutes? That’s a long time! I can say with certainty I’d gag or get tired standing there lol I think the medication still causes issues in our mouths but some of these techniques may lessen it. Any suggestion is appreciated for sure though. Chemo pills ain’t no joke!

Jump to this post

Hi @nypara66, Placing Extra Virgin coconut oil or EV-olive oil in the mouth and swishing is called Oil Pulling. This practice dates back centuries. It can help reduce inflammation, oral yeast infections, improve gum and oral tissue in the mouth among other attributes.

You can try working your way up to 20 minutes to get the full effect. You might start with just a teaspoon of the coconut oil, let it melt on your tongue, then swish somewhat vigorously for 2 minutes or 5 minutes and spit out into a tissue. Don’t swallow the oil/saliva mix. Also don’t spit it in the sink as this can clog drains. When you get used to that amount, then gradually increase the time and amount of oil over the course of days or weeks.

You don’t have to stand around with a timer or waste time while swishing. Though I do set a timer on my watch for 20 minutes, I go about my morning by cleaning out the dishwasher, catch up with notifications on Connect, toss in a load of laundry, take a quick walk, etc.. It’s a quick 20 minutes to help calm your mouth.

Here are a couple of articles that you might find helpful which explain the benefits and the how-to:
https://www.medicalnewstoday.com/articles/323757#risks-and-considerations
~~
https://www.healthline.com/nutrition/oil-pulling-coconut-oil
Oil pulling with organic EV-coconut oil has really helped keep my tongue/mouth happy after months of chemo and a bone marrow transplant. Even years later there are lingering side effects that promote yeast infections and burning mouth syndrome. The pulling seems to help significantly. So you might want to give it a try, plus it’s coconut!! It tastes good. ☺️
What do you think? Will you try it?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3 2:37pm
In reply to @andreamc03 "Hi Lisa. Hopefully you will get some definitive answers once you meet with your Hematologist in..." + (show)
@andreamc03

Hi Lisa. Hopefully you will get some definitive answers once you meet with your Hematologist in a few weeks. Until then, it’s easy to google things but that can cause more anxiety without knowing exactly what you are dealing with. It would be helpful to know what your bloodwork showed. For example were your platelets high? Was your hematocrit high? I had high platelets and elevated hematocrit. I saw a hematologist and a bone marrow biopsy was performed which revealed Jak2 mutation. I was diagnosed with Polycythemia Vera. I take 2 baby aspirins a day and go for occasional phlebotomies to keep my hematocrit under 45. I consult with Dr. Tefferi from the Mayo Clinic. I have no other symptoms. Perhaps your symptoms will improve when you begin treatment for whatever your diagnosis is. Good luck to you and the most important thing to do is find a good Hematologist, ask questions and be careful googling information until you know more otherwise you will become overly anxious and overwhelmed. Best to you. Andrea

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Such a wise and helpful post, @andreamc03. When were you diagnosed with polycythemia vera?

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1 reply
andreamc03 | @andreamc03 | Nov 3 6:14pm
In reply to @colleenyoung "Such a wise and helpful post, @andreamc03. When were you diagnosed with polycythemia vera?" + (show)
@colleenyoung

Such a wise and helpful post, @andreamc03. When were you diagnosed with polycythemia vera?

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Hi Colleen- I was diagnosed 4 1/2 years ago. I originally “googled” PV when I was diagnosed and felt overwhelmed by the information that encompassed PV. I was determined to consult with Dr Tefferi from the Mayo Clinic after reading medical articles that he authored. After speaking to him he made me feel much better about the diagnosis.
Best
Andrea

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