Loved one diagnosed with Polycythemia vera

Caring for & supporting a loved one
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Hi everyone.
I hope you don’t mind me looking for answers on behalf of someone else.

My beautiful husband, Connor, was diagnosed with Polycythemia and has been having venesections for the last month weekly. Everything I’ve read it seems that this type of cancer is more common in older men, Connor is only 29. They have said that his blood is that thick he is at an extremely high rock of a stroke or heart attack. Is the rare in younger people?
Last week they did a bone marrow, and about 20 minutes in they called me in. My rough as they come, covered in tattoos head to toe, in absolute bits, he said it was the worse pain he’s ever experienced, I was literally pinning him to the bed with my own body weight, he was sweating buckets and on the verge of passing out, they couldn’t complete but felt they had what they needed. Everything I’ve read, the comments make the procedure sound very easy. Did anyone else struggle with the biopsy pain?
The next step would be decision on oral or intravenous chemo we were made to believe. I don’t really know what I’m asking, just information I think. I’m acting all blasé about things but I can’t stop reading, and I’ve been watching him for months shrink away, and it’s just not stopping

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Hi @Badger

Firstly welcome to the forum and thank you so much for posting and sharing your experience.

Though I’m not as young as your partner I was diagnosed at 39 in Aug 2020 with Polycythaemia vera (PV) but reading up on the symptoms feel I’ve been living with this for many years. Despite coming up to my 2 year anniversary of being diagnosed I’m still learning about the condition and how I’m acting and responding to it.

Being diagnosed with any type of cancer is scary and will obviously bring fear to those diagnosed and those around them. You’re having to think and feel it physically, mentally and emotionally.

I’ve not had a bone marrow biopsy as despite researching and quizzing my haematologist about it, they kind of dismissed it and listening and reading to peoples reaction to having it done, it wasn’t something I was going to push.
It doesn’t seem like a pleasant procedure but if it provides better information for your medical team and conclusive decisions on the next step or treatment it maybe best to bite the bullet.

Treatment differ for different people which I found difficult to comprehend as I just assumed once you have cancer you’re straight in hospital having chemo.

This isn’t the general case with Polycythaemia vera (PV).

In some cases, treatment is having venesections and aspirin, another common form of treatment is hydroxycarbamide or hydroxyrea. (Oral chemotherapy) Another option is interferon (injection) you do yourself.

Initially your medical team will want to gage your blood levels and wait for these to stabilise and then decide what’s best to do to control your levels. This can take weeks or months.

The blood cancer website has a brilliant breakout of what Polycythaemia vera (PV) and info about managing it, treatments and prognosis, I can’t recommend it enough.

What you need to appreciate cancer effects people differently even if you have the same type of cancer and the same thing applies to treatment and medication.

What really helped me from my day of diagnosis to now, is the amazing support and advice you get on this forum.

I’ll be more than happy to discuss how having Polycythaemia vera (PV) has effected me over the initial two years either with you or your partner and answer any questions you may have as I’m sure all of us here will be able to. Just drop me a message or post on here.

This forum isn’t just for those diagnosed but also for people supporting those with the condition too.

The clinical nurses attached to the forum and support line are equally amazing too.

Take care of yourselves and don’t be stranger to keep posting on here. You guys aren’t alone in this :slight_smile:

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Hello @Badger,
Welcome to the Blood Cancer UK forum.
I am so sorry to read all that has happened for you both over the last month and especially during his bone marrow biopsy.
The wonderful reply below from @Rammie18 is very detailed and I hope you have found it helpful. I honestly don’t have anything more to add to it with regards to the PCV and treatments.
However, I do want to comment on his biopsy. I am sorry that he had such a traumatic time with that procedure. Sometimes these biopsies can be ‘uncomfortable’ but they really shouldn’t be painful. Some hospitals can offer entonox (gas and air) through the procedure and some can offer some relaxant medication prior to the biopsy, like diazepam if patients are anxious.
Hopefully your husband won’t need another one, but if he ever did, he should ask and push for having entonox through the procedure (All fingers and toes crossed!). Sometimes being younger means stronger, tougher bones to get a sample from unfortunately.
The sample will provide the Consultants with genetic information, for them to make a future treatment plan.
Just as @Rammie18 has mentioned, if you or Connor do want to talk or go through anything at all, please just call our support line. We’d be more than happy to advise or chat over the phone.

Please keep in touch - wishing you both a better week!
Kindest regards,
Heidi.

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@Badger a great big welcome to our forum and I cannot add to @Rammie18 and @Heidi_BloodCancerUK brilliant, helpful responses.
This forum is here as much for you as your husband as cancer is definitely a family disease and you have the same thoughts and emotions, questions and practicalities.
I expect you are keeping everything running as smoothly as you can at home.
It must have been and is scary seeing your husband shrink away and you were and are powerless to do anything.
I think I had a life plan and suddenly that all goes up in the air and the future is scary.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Please keep posting and say how it is for you.
Be kind to yourselves and spoil yourselves.

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Thanks all for your responses. We seem to be getting on ok, I’m a restaurant manager so I work long days but we have a good network of friends thankfully. It’s been hard on him, he was an industrial electrician until he had a car accident which affected his mobility meaning he had a lot of treatment ahead of him (ironically how we found out about this). All the treatment in his legs are now on hold while he battle this, so he’s got major cabin fever at the minute. We’re hoping to move into our caravan over the next month, once we’ve found some land to rent, so at least he’ll be able to get about our home easier

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Gosh @Badger I bet you are doing a juggling act with your demanding job and I trust you are able to ask for help and actually accept it, I find it so difficult.
Look after yourself as well as you are looking after your husband and I hope you find some land to rent soon.

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I can confirm as someone who has had several bone marrow biopsies that they are hideous and really painful. It’s worse the second time around because you know what’s coming. The local anaesthetic only affects the surface and not the area where the needle will penetrate. The first time I had one, the doctor lied and told me that it wouldn’t hurt! I know better now. Hope it isn’t necessary too often and wishing you both all the best.

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So sorry to hear about your loved one’s illness and wish him and you all the very best. Dealing with blood cancer is tough and puts a lot of pressure on family so be kind to yourself.

I can’t comment on Polycythaemia vera (PV) as I had Acute Myeloid Leukaemia, however I am a bit of an expert on bone marrow tests having had one every 3 months for the last 2 years and quite a few before that. They are never nice but how painful they are varies quite a lot depending on who does it and how expert they are and whether they happen on to a sensitive spot. So the good news is the fact that your partner had a very bad one first time around does not mean that it will be anywhere near as bad the next time (should he need more). As others have mentioned you can ask for gas and air if needed.
The very best of luck to you both.

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Thank you all. Connor seems more tired than usual at the minute. I had the great idea of driving to Skegness and having the day out Wednesday… he’s now convinced I’m trying to kill him haha. But he’s got amazing spirit. Keeps reminding me he can still look after me. I got my booklet through yesterday and the information is great xx

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Hi @Badger I have been thinking about you and Connor, how are you both doing?
Look after yourselves

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I too can confirm that a bone marrow biopsy with just local aesthetic x5 is excruciating especially when the nurse is struggling to get the marrow
I was crying and she kept saying one more
That biopsy turned out inconclusive and needed another and I said I wasn’t having another unless I had pain relief
Gas and air brilliant, had 3 more over the course of time with gas and air.

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Hello @2DB
So very sorry to read that your BM biopsies were far from pleasant experiences. Having never had one myself, but assisting colleagues, I do know that they are all very different for everyone. I have literally seen patients fall asleep whilst having one, and others that have said ‘never again’. Every patient that has gas and air though, sails through the procedure really easily. I’d like to think that all hospitals would offer this option. I’m glad to read it worked for you and helped you get through 3 more! Well done!
Take care, Heidi.

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Hi everyone. Thank you for all your replies. All your experiences have been very helpful. We’ve been today for a consultant appointment, we were under the impression it was for a treatment plane but no. Connor has been advised to have another bone marrow, they believe he also may have mf. We’ve managed to talk him into the procedure again, made up mainly of tears and guilt (I know, cruel) but I can’t bear the thought of the alternative. He’s fast asleep, and I’m just feeling super emotional. He’s my best friend but that’s the kind of relationship we have too, everything’s a laugh and a joke, we don’t really tell each other how we feel, we know, but neither of us are very verbal. I wrote him something today. I want to make it more than sending a text though. Hope everyone else is ok, and apologises for my recent silence xx

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After reading your comment, I requested it today but our trust don’t offer entomology for bone marrow as it’s ‘unnecessary’ , but they’ve offered him a mild sedative that he’s takes 2 hour prior. Fingers crossed xx

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@Badger it really comes over in your post how close and what a lovely empathic, laughing relationship you have.
I am sure you were able to put into words those sentiments it is sometimes so hard to say.
I was also struck how, now he is asleep, you are able to let your emotions out.
Please let us know how the bone marrow goes and how you are both doing.
Look after and be kind to yourselves.

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Thank you Erica. You’ve been very supportive. He’s woke up and ready to face it again. I’m glad, I really weren’t sure where his head was going to be at this morning. I feel like you’ve been around on forum a long time. Have you come across anyone young in connors position? I asked the doctor yesterday and he told me he’s the youngest patient he came across. I’d like to get a view from someone around his age. He’s 29 xx

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Hi @Badger I think that all blood cancers can touch all ages, obviously some appear to target certain older age groups more than others.
I have one of the most common blood cancers, Chronic lymphocytic leukaemia (CLL), and when I was diagnosed there was nobody else with any blood cancers registered with my medium sized GP surgery of any age.
Obviously there are some blood cancers that children are more likely to have, and I have read quite a few uni students stories too.
I hope some younger forum members will respond to you.
The advantage of being younger is you are more likely to be healthier and fitter to start with.
Just take one day at a time and do lovely things together.

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Thank you. Your words are very comforting xx

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Phone call today, booked in for round 2 Thursday… they’ve prescribed a sedative this time so fingers crossed xx

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Hi. Sorry to hear what your husband and you have had to go through. I hope it goes better than the last one. Take care.

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