Son diagnosed with PV. Sarcoma 8 years ago: Devastated mom

I have ET Jak2. It is good that your son's CBC have bn normal. Doctors will know more after your son has marrow biopsy. Praying he gets good news. I will be praying for you and your son. Turn everything over to God, he is with you and your son. You will feel much better once you put everything in God's hands. God sees what you are going through and he is there for you, just say a prayer to him. God still answers prayers 🙏

Hi @deedeekay As a mother myself, I can imagine your mind is racing with thoughts of what your son has already gone through with his cancer journey. But I think you can take a deep breath and exhale because having PV (polycythemia vera) is nothing similar to the Ewing’s sarcoma.

Basically, the mutation on the JAK2 gene is a malfunction of the ‘off’ switch, allowing too many red blood cells to be produced. It’s generally a very treatable type of blood disorder with medication. Some hematologists don’t even classify this as a blood cancer, but more of a chronic condition. Anecdotally, even my own hematologist oncologist has said this is a disease patients will pass away with, not from.

Since the bone marrow is the blood manufacturing site in the body, your son’s doctor is being thorough in confirming the diagnosis through the bone marrow biopsy. The samples will give the doctor an overall picture of health of the bone marrow and its ability to produce healthy blood cells.

The doctor or a NP will take samples from the spongy core and liquid parts of the marrow. This is done on the iliac crest near the large dimple area on the butt. Your son will have anesthetic to numb the area, or he may be offered a mild IV sedative similar to what’s used during a colonoscopy. It’s over in a flash! Because there are multiple tests run on the samples, complete results may take up to 10 days to be returned.

I hope you’re able to sleep better this evening…and don’t forget to exhale! ☺️
Will you let me know what you find out, please?

@loribmt yes. And thank you. This information is helpful for my mental health. I have PTSD from his Ewing’s sarcoma treatment. I quit my job and was with him for the entire year….one week in hospital, one week home, one week in hospital…. Etc. i was traumatized but somehow i stayed strong for him. I think that is why this is hurting so bad. I cry all day, don’t go to work, don’t eat…. Just stay in bed. It has done a number on me. I’m so scared.

I’m no doctor but based on all of my research on PV, this is one of the few cancers that, if properly treated, will have no impact on your son’s longevity.

I have PV, everything I have read about the cancer is that it is non curable but treatable and manageable.

Oh goodness, @deedeekay. I wish I could reach through this computer to wrap you in a reassuring hug this morning. I’m so sorry this new health issue with your son has you reeling! You were so immersed in his cancer journey 8 years ago, it’s understandable to have all those emotions resurface. You’re terrified to re-live all of that and worried your son will be going all those treatments/side effects again.

If he is being diagnosed with PV, as I mentioned earlier, this should be absolutely nothing like his experience with Ewing’s sarcoma.
Treatment for PV is manageable with medications such as hydroxyurea. Yes, it is termed type of ‘chemo-drug’ but bears no resemblance to the intensive chemotherapy your son received for his sarcoma. This is a daily pill that is generally very well tolerated. The goal being to lower the amount of red blood cells in circulation.

There are other drugs such as Jakafi, or Besremi, which actually works to lower the JAK2 mutation involvement. As I mentioned earlier, PV is considered more of a very treatable ‘blood condition’. Your son won’t be in the hospital and no need to stop working. Basically, his life shouldn’t change much except for having to take a pill or possibly receive an injection every two weeks depending on the medication.

To be honest, I’m more concerned about you right now. You’re losing out on so much life…yours and your son’s, by being consumed with worry and fear, Truly, I appreciate what you’re going through. I’ve been a long term caregiver and the stress can be overwhelming. Even when you’ve had a break from the intensity, there is always the underlying feeling that ‘what if ‘we’ have to go through that again’…it’s emotionally draining!

I hope this isn’t overstepping, but do you have any other family or friends for support to talk with? Have you spoken with your son about what you’re feeling? Getting his perspective might be really helpful for you.
Would you consider seeking the advice of your family physician, a counselor or clergy to help talk you through your past trauma? I just want you to be able to see the light around you again.

Years ago I came across this little piece. It brought me immeasurable clarity. (Author unknown)
“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”

Anytime you want to take, I’m here for you. We can work through this together. ☺️

You are so very, very sweet. I am seeing a therapist starting next week so that should help. My son will not talk about it. Actually he’s not even talking to anybody. I know he’s scared because of what he went through before and that was so very very hard on him. At one point he wanted to die. He said he’s 18. He’s lived long enough. That broke me more than I can even tell you. We’ll get through this and thank you for your advice.

@deedeekay
HELLO DEEDEE
I WISH I COULD SPEAK WITH YOUR SON ! IF HE HAS PV , THERE A SEVERAL TREATMENTS !
I HAD PV FOR 20 YEARS!!
LIVED NORMAL LIFE , BERY ACTIVE , ENJOYED LIFE ! I WOULD TELL HIM THAT THIS IS NOT LIKE THE CANCER HE HAD BEFORE ! HE WILL BE ABLE TO FUNCTION NORMALLY! FOR MANY MANY YEARS ! SINCE MY FIRST DIAGNOSIS! TREATMENT HAS IMPROVED! The DOCTOR S KNOW SO MUCH MORE SINCE 20 YEARS AGO!
IF YOU CAN , let your son SEE MY POST ! I AM A REAL PERSON, I HOPE HE CAN TRY TO THINK ABOUT WHAT I AM SAYING! I SINCERELY HOPE HE READS THIS AND SOME OF THE OLDER POST ON PV !
Mom , YOU NEED TO TRY TO READ OTHER PATIENTS POST ON PV SO YOU CAN BE LESS FEARFUL OF THIS CONDITION! I think IT MAY HELP YOUR SON TO SEE YOU LESS UPSET
SINCERELY HANYA

@hanya thank you. I will have him read this.

@loribmt bone marrow biopsy today. He said it hurt, a lot. Poor guy. I wish it was me, not him. He also has chronic kidney disease from chemo. And an immune deficiency called CVID. Goes in once a month for IVIG infusions. He had a massive blood clot 6 months ago which they are monitoring. He has two testicular masses they are monitoring every 3 months. Also has factor 5 Leiden. It’s just not fair. He deserves to be happy and healthy. Such a great kid.