Which questions did you ask / do you wish you asked when discussing diagnosis and treatment with haematology?
Following 1st bone marrow test a few weeks ago (not a good sample), husband has been given diagnosis hairy cell leukemia. Later this week he will get the results of 2nd bone narrow test (they are checking if it’s normal hairy cell or variant and also how far the disease has progressed. They are likely to discuss treatment with chemo too. Any advice for things to ask at the upcoming appointment?
Many thanks !
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Hi @SunFlower and welcome to the forum.
Sorry to hear about your husband. Tough time for you both
My diagnosis was something called Myelofibrosis.
I’m sure others will offer thoughts and some of the things I asked were:
- Treatment options
- Potential side effects
- Prognosis as things stood at time of diagnosis
- What stage cancer was at. For blood cancers staging a bit different
- Things to look out for and flag
Hopefully this gives you some thoughts
You can also reach out to @BloodCancerUK-SupportTeam who are excellent at pointing you in the right direction of guidance and resources.
Take care and wishing you the best for next steps
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Hello there @SunFlower, welcome to the forum. Sorry I was a bit of a drive-by commenter on your other post. It’s really lovely that you’re here to gain some suggestions from others experiencing what you and your husband are, I’m sure you’ll get some great ideas and I see dear @DuncanB has already offered his brilliant tips.
Unsure if you’ve had a chance to read up about Hairy cell leukaemia ('HCL') but Blood Cancer UK have some well-researched information here where you’ll also find links to further information about typical treatments: Hairy cell leukaemia | Blood Cancer UK
Here is the Cancer Research UK information about Hairy cell leukaemia ('HCL'): Hairy cell leukaemia | Cancer Research UK
And here’s some further information from Leukaemia Care UK: Hairy cell leukaemia (HCL) | Symptoms and Treatment | Leukaemia Care - Leukaemia Care
While I live with a different blood cancer called Polycythaemia vera ('PV'), it is also considered a chronic type like Hairy cell leukaemia ('HCL'). My understanding of chronic blood cancers from discussing with my haematologist, attending conferences, and gleaning information around the forum is that they develop only slowly and thus are often able to be lived with in the long-term, with some slight adaptations.
I’d ask your husband’s specialists about the chronic nature of his diagnosis. If any treatment is offered, do consider asking how it can affect both of you. Sorry to be a little too forthcoming, but my first haematologist did not warn me that the chemotherapy I was prescribed could affect my partner, or any other sexual partners. If you’re planning on having children this would be something to discuss with specialists before any treatment begins.
My personal tip is to write everything down that comes to mind to ask the specialists, no matter how important it seems. Do keep note of any symptom and your husband will soon begin to note any patterns in energy levels at the time of blood tests, which will likely become pretty routine with chronic disorders.
I’m sure that’s enough to be thinking about at this worrying time. Perhaps you might like to search the forum for others living with Hairy cell leukaemia ('HCL') and how they’re doing? Just use the search box at the top or Related Topics below. Do please keep us posted about how you and your husband get on @SunFlower.
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Hello @SunFlower
Welcome to the forum - and thank you for taking time to reach out.
My heart goes out to you both as you try to navigate your husbands diagnosis.
I received a diagnosis of Chronic lymphocytic leukaemia ('CLL') last April - and was, like you both, very unsure what to ask.
The haematology department at my local hospital in York were brilliant - and reminded me that they are always there to answer questions i may have. I was also given a key worker and a direct number for this person.
As for what to ask - initially i had no idea , and i think they realised this as i am sure it often happens, so they re assured me that this is normal and advised that as i formulate questions should contact them. I avoided Dr Google and I’m happy to say i still do. The Blood Cancer forum has allowed me to speak directly to people with not dissimilar circumstance to my own and this i have found to be comforting and informative, so i am confident you will have a similar experience.
When you speak with your medical experts please don’t be frightened to ask away, they will expect this and I’m a sure they will accommodate any questions you have.
I can see @Duncan and @DuncanB have left very kind responses and i echo their words.
Please remember you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
Do take good care of each other
Kind regards
Mike
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Hi @SunFlower and welcome to the forum.
The others have given you some really brilliant suggestions already. I wanted to add a personal angle, because I went through chemotherapy myself a few years ago and there were a few things I found it especially helpful to ask at that pre-treatment appointment - some of which I wish I’d thought of sooner.
On the clinical side: asking what the cycle will actually look like in practice was really useful for me - not just which drug, but how often, how long each session typically runs, and what a normal week looks like around treatment. I also made sure to ask for an out-of-hours number, not just a daytime contact, so I knew who to call if something felt wrong overnight or at a weekend. And asking about interactions with any existing medications early on meant there were no surprises later.
On the practical side, a few things made a real difference when I was preparing. Getting to the dentist before starting, if the medical team say it’s OK and timing allows, is worth doing because chemotherapy can be tough on teeth. Freezing some easy meals in advance while energy levels are still good is something I’d really recommend. And making sure both your husband and the people around him most are up to date with their flu/Covid jabs is worth getting onto early as infection risk increases once treatment begins.
@Duncan’s suggestion to write everything down is one I’d echo wholeheartedly - no question is too small, and they really have heard it all before.
Our nurses on the Support Line are brilliant at talking through exactly this kind of thing ahead of an appointment, if that would be helpful? You can call them (for free) on 0808 2080 888 (option 1) or support@bloodcancer.org.uk. Please do note that we have different hours over the Bank Holiday.
Wishing you and your husband all the best for this week, please do keep us posted.
Ceri - Blood Cancer UK Support Services
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@Ceri_BloodCancerUK thank you for the practical suggestions !
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Excellent advice as always @Ceri_BloodCancerUK
One thing I would share regarding dentist is the importance of knowing your platelet levels.
Early on a couple of months after diagnosis I went to the dentist and was told I needed a tooth removed.
Without fully understanding platelet levels I said to the dentist I would come in next day.
Extraction went reasonably well but I couldn’t get the bleeding in my mouth to stop and was back in the dentist chair next morning.
Dentist tried something that hoped would help which it did to some extent.
Ended up having to call Haematology and my Consultant arranged for some medication.
Had to make 50 mile dash to Pharmacy at Raigmore and picked up medication 15 minutes before closed for the day.
When I had another extraction before Transplant was done at the hospital and no issues
Just wanted to share not to alarm anyone but just to flag up potential issues if platelets on the low side
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