Wellness

[Wsmom]

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@FatCatinCT wrote:

My husband has Polycythemia Vera.  At first they did phlebotomy every week for a few years and hes been on chemo meds for over 10 years now.  

Taking any kind of iron supplement or eating high iron foods is a definite no, as his hematolgist states, "it can be catastrophic"

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@FatCatinCT ,  this is what I have.  That is why I have been asking about the Hematocrit.

[FatCatinCT]

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@Wsmom wrote:

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@FatCatinCT wrote:

My husband has Polycythemia Vera.  At first they did phlebotomy every week for a few years and hes been on chemo meds for over 10 years now.  

Taking any kind of iron supplement or eating high iron foods is a definite no, as his hematolgist states, "it can be catastrophic"

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@FatCatinCT ,  this is what I have.  That is why I have been asking about the Hematocrit.

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Sorry if you mentioned that you had this in the posts, I did not read them all.

Hubby is doing very well, just passed his 20 year mark with PV and told his dr., I want a cake!  lol...

As I stated, he had blooddraws (pint) in the beginning a couple of times a week for several months then weekly to remove blood thus lowering his HCT.  After that stopped working several years later he was put on hydroxurhea (sp) and has been on that for probably 15 years or so.  He gets fatigued and itches like crazy at times but that's about it. And of course goes every three months for blood testing and see Dr.

Wishing you all the best!

[Wsmom]

@FatCatinCT , I had not mentioned what I had.  There's so many things it could be if it is something I figured she would go crazy trying to self-diagnose.

Your husband does deserve a cake!!!  I have been diagnosed for about 12 years but in going back to a bad blood test that I ignored because they were just a little high and I was so busy with kids and life and work it has really been more like 20 years.  So by the time I got diagnosed I had so many symptoms that I had attributed to menopause and was in stroke zone.  

I did just the phlebs, then the HU and phlebs for a few years until I failed on that and the doc put me on Jakafi.  That was a game changer.  No more itchiing!!!  No more phelbs!!   

I wish your husband the best, too!   I don't run into too many people who have this.

[tends2dogs]

@Wsmom I found your post interesting.  I am sorry you have this, but glad there is a treatment.  I was just wondering if a bone marrow or stem cell transplant had ever been offered?

My DH did many, many phlebotomies due to iron overload from so many transfusions of packed red blood cells. (over 160).  He tried a drug for a year called Exjade, but it was so cost prohibitive, he resorted to the blood letting ) because  insurance paid for it.  

Have you had to have a bone marrow biopsy or is this just diagnosed through blood labs?  I hope that you haven't had to experience that.  

Glad you are doing well.  

[Wsmom]

@tends2dogs , yes, I've had at least four BMBs to check for progression.  One of the docs did talk about a bone marrow transplant if the Jakafi didn't work but that would be a discussion.  

Those biopsies are a real treat!!!!  lol

First one doc told me I didn't need anything...I've had a baby and it was no worse than that (said a man who has never had a baby nor BMB).  Wrong.  Second one a little sedation which did no good.  Third one a lovely cocktail that I felt nothing, but the last one the doc had to do in the office because the center wouldn't do it due to low platelets so back to just basic numbing; it wasn't bad.  All different people doing them.  Different doc.

What is your husband's diagnosis and does he still need phlebotomies?   

Yes, these meds are awful.  The one I am on I had to fail on a different med before insurance would pay for it and the co-pay can be huge.  The med, itself, is about 17k.  Absurd.

[tends2dogs]

Yes, @Wsmom , I saw the price of the drug.  Yes, absurd.  I am no stranger to the cost of some of these drugs.

My husband had MDS, but had a bone marrow transplant in 2009.  It was a complete success.  The chemo he did for the prior 10 years was worse than the transplant.  He really did fly through it.  He no longer does the phlebs.  His counts are normal.  He has a HGB of around 16 now.  There were times it was as low as 4 or 5.  Not fun.  

He has had around 10 biopsies, done by different doctors.  He never had sedation until the last one done after the transplant.  He couldn't believe it was never offered to him before.  I was in the room for everyone and when they would draw back that needle, I felt terrible for him!  He said the pressure was excrutiating.  The amount of vials they drew out was unbelievable.  

We had a doctor at Rush in Chicago that did several BMB on him.  She made her whole staff have one so they knew what patients went through!

They have come a long way with transplant.  We said "no way" back in 1999 because the odds of survival were so bad.  Well, never say never.  He had no choice because nothing was working anymore.  He went for it and was cured.

In the meantime, I am happy you have something that is working for you!  I alway enjoy posting with you.

[Wsmom]

@tends2dogs , that is so good to hear that the bone marrow transplant was such a success for your husband.  I belong to a few PV FB groups and it seems that the BM transplants are addressed when you start progressing to AML, which is what my doc's concern was when we chatted about it.  I'm going to go do a search in those groups now to see if I have missed anything on the subject though.  

Some of these meds the side effects are just awful.  It is a constant using one form of treatment until it doesn't work and then the search for the next and then the weighing of side effects...which it sounds like you know exactly what I mean.

Yes, I totally agree with your husband on the BMB.  All of it...and such a strange sensation.  You are a brave woman...I never even thought to have my husband come in with me.

I agree...always a pleasure posting with you!

[tends2dogs]

@Wsmom One more quick comment......most of the bmbs were done in doctor offices.  Often the rooms were tiny.  I remember one where I had to squeeze into a corner by my husband's head.  The doctor said, "are you sure you want to be in here?"  Of course, I said yes.  She said, "make sure, because we don't have time to take care of you if you pass out."  I wasn't going to be anywhere else.

This may be TMI, but when we were first married, second marriage for both of us, the doctor let me stay in the room when he gave my husband a vasectomy!  It was in his office that time, too.  That was in 1978.

As far as treatment side effects, we are far too familiar.  The type he used would drop all his counts down so much that he would end up in the hospital, usually with pneumonia and fevers.  He was the brave one!  The will to survive is strong.  

We were so thankful to have good insurance.  It isn't cheap to be sick!  

[Wsmom]

Ugh...you are a good wife, @tends2dogs !  I don't know that I would have been offering to go in with my DH!!!  But did you watch?  Either the BMBs or the vasectomy?

It seems like even though your DH and I have different illnesses many of our experiences are similiar.  

Yes on the insurance.  It is a crime how much these meds cost.

[tends2dogs]

LOL @Wsmom , yes, I watched.  I love medical stuff.   The number of vials pulled out is around 8 or 10.  The instrument they use to go into the bone looks like a wine cork opener, screwing in until it punctures through, then they remove the handle thing and start drawing off from the "tube" that is inserted.  It is quite a process and it takes strength.  The very first one that DH had done, the doctor actually got up on the table and straddled his back to get leverage.  He was a small man and the instrument kept sliding off the bone.....YIKES!

Hope this wasn't too graphic...

Oh, and I watched one of our dogs being neutered and the vet let me watch him remove a kidney stone from a cat's urether.  I know, I am strange when it comes to that kind of thing.