Haematology

[Clee1787]

I have been having tests now for months for mpn all my appointments have been done over the phone I got home today to find a letter telling me I have a face to face appointment with the cancer unit docs won't tell me anything and they expecting me to wait two weeks am I over thinking this or what I'm going out of my mind I'm 37 years old with 3 kids and it's scaring the crap out of me

[hunter5582]

Face to face appointments are far superior to phone calls for establishing a healthy doctor-patient relationship. This allows for better communication and is more humanizing than talking on the phone. Suggest being relieved that you finally have the chance to be in-person with your care team. It is about time if this is the first appointment where you are going to actually see the doctor. Hopefully you will will have more live appointments in the future.

[Cat1001954]

my first appointment was all about medical history blood tests and general chit chat Try not to worry I know it’s easy saying but you will be fine x

[Mostew]

Is there a heamatology nurse at your hospital. ?Don't know where you live but in UK I find they are helpful when I need to talk through any worries I have. And no need for appointment

Let us know know how you get on

[DottyDaisy]

Hi CleeI too was terrified when I saw that my first appointment was at the cancer clinic. Nobody thus far had told me that my freaky blood test results were actually a form of cancer. Albeit a chronic but incurable one. It was weeks before I could bring myself to tell people about it and reassure them that, after living a normal lifespan, most likely I would eventually die WITH it, but not OF it.

In fact, the main significance to my life is the chronic fatigue which seems to go with an MPN for most people.

May I offer you a little advice please?

Don't let yourself be bullied into accepting medication you are not comfortable with and know nothing about. In particular, be aware that a drug which brings down your blood results to get them within normal parameters may do nothing to improve your quality of life and may well introduce side effects that are harder to live with and may require further medication.

This chat group is full of wonderful people who have acquired a vast wealth of experience about the condition and the wide range of treatments available. I have been infinitely grateful for the advice I have received here.

We will look forward to hearing how your appointment goes, as we happily continue to share our respective journeys.

With Love and Light and virtual hugs from Daisy

[TB66]

Hi I’m new to this group and I’m sure that you will get lots of advice and amazing support from others on here, I know how difficult this time can be but please be strong until you see the doctor, stressing yourself will only make you feel worse. The people on here have really helped me and sent me some positive thoughts.. so I’m doing the same for you. Take care of yourself.

[GSD23]

Dont panic. Mpn are normally looked at by Haematology which in our hospital is attached to the cancer unit. Haematologists work closely with Oncologists. Btw an mpn is thought of as a cancer you can live with, treatment helps reduce the symptoms some people arent even on treatment to start with. Have a look at Macmillan's site and blood cancer mpn can be found there. It explains it really well. At the moment you dont know what you dont know. Try not to go down the rabbit hole yet. Make sure you take someone with you to listen and take notes at the appt. Hopefully you will get good news. Do a group search you will find some people live with some types of mpns for many many decades. Good luck.

[woozlebop]

I get how you feel. I went to my doc thinking I might’ve had diabetes. It’s in my family. I didn’t have diabetes but he made a referral to a haematologist. Platelets were at 630. I sat at the specialist centre of the hospital and the haem’s receptionist came out and said doc will see you now. She’s in oncology. I asked why she was in there. Was told that’s where her rooms are, and got an eye roll. The Haemo couldn’t handle my confusion and fear so I sacked her (well we pay their wages). I have another Haemo now. He’s great. My platelet count is double that now (after 4 years) but I have no symptoms and am triple negative. I have a blood test every month and see him every 2 months. I agree dottydaisy. Research your condition, research the meds, research recent studies. We need to make our own educated decisions about our own bodies. I think my Haemo would like me on HU but he’s also given his blessing to my trying alternative treatments while he keeps a close eye on me.

My Haemo gives me a physical exam as well every time I go. Could be your cancer centre docs have been really busy. Tele health is often quicker than face to face. Maybe they’re feeling it’s about time they got their act together. Could you ring the dept and tell them how you’re feeling about the letter?

Best wishes, and yes, we have an amazing group here to support you.

[Daisyplus4 in reply to woozlebop]

Hi, I appreciate your comment and approach, esp re alternatives. Can you give sources of info and maybe the basics of your plan? I have PV and have taken HU 500mg and occasional phlebotomies for 2.5 years. Under a holostic health center, Im taking dozens of Standard Process brand, natural food supplements, eating mostly raw veggies and fruit, fish, eggs, legumes, nuts. No dairy, but goat cheese, no grain, corn, red meat or chicken, sugar. Juicing a la Chris Beat Cancer book. I cant afford going much longer on the supplements. Not aware of benefits from 6 months of this. But Ive always been active--walk/jog 3+ miles a day, and healthy. Surprisingly fatigued now, must nap.

Oncologist does not approve supplements.

Your thoughts?

[woozlebop in reply to Daisyplus4]

Hi Daisy. That’s really great you’re watching your nutritional input and exercising regularly. I found a FB page called Essential Thrombocythemia Alternative Treatments Discussion Group. But it’s MPNs in general. You’ll see the owner’s website, and on there is her bio. She’s an educator and has responded on this forum in the past. She’s jak2 ET and her platelets were nearly 1000. She eventually got to middle of normal range and has had no cytoreductive meds. So I was intrigued.

I don’t know if my plan will work, and I take only a few supplements. I’m on low-dose aspirin but take turmeric, zinc, vit E and Vit D. (My Haemo also blood-tests my vitamins) My GP prescribed CBD isolate which has done great things for other niggling health issues and is anti inflammatory. It even healed nerve damage where I’d had numbness for 3 years. I sleep 8 hrs and don’t have naps in the day. I'm waiting to see if it does anything for my platelets though. I Have another blood test this week and see Haemo next week.

I make all my food from scratch but eat a wide and colourful range. I get organic if I can. Fruit, veg, dairy, grains, legumes, beans, nuts, lots of spices, fish, meat very occasionally and so on…. I use hemp seed oil and hemp protein powder. I don’t do juicing as I want the fibre. I swim, I dance, I spend time with family and do yoga but I get days when I’m tired too. Maybe because I’m old lol 😩

On YouTube there are latest nutritional research videos by Zoe Nutrition. They’re fascinating and myth-busting. The founders are professorial researchers at The London and Oxford universities. I’ve learned a lot.

As for Oncologist not approving supplements? It’s your body. Mine tests me, so I’m guessing he’s not enamored as it’s possible to take too much of dome supplements. But for every health expert that says one thing, there will be another expert that says the complete opposite. That’s why I think it’s incumbent upon us to research the pros and cons of our options and make an educated decision about what’s best for ourselves. It could be we don’t get it right but it could also be THEY don’t get it right.

Keep us posted about how you’re doing. Chronic fatigue is really awful. This is a great group and we can all support each other. My very Best wishes.

[MWxxxx]

Hi. I completely understand your worry, I was exactly the same and in my 40's when diagnosed also with young children. As others have said, being treated by Haematology which is usually linked to Oncology departments is frightening. Also, being asked for a face to face out of the blue. However, it is actually likely to be routine. My hospital now does most appointments over the phone but every now and again they think "oh lets get them into clinic for a face to face". I don;t think they realise how much fear that can create. In reality they probably think it would be useful to run a few routine checks like feeling the size of your spleen and taking some weight measurements etc. As someone else has suggested, there is usually a Haematology nurse or even an MPN nurse who you can ring or email for reassurance. If you don't already have a contact for them, ring the number on your letter and ask if there is a Haematology nurse particularly assigned to support the MPN clinic. Good luck and as others have said, please try not to worry.

[Lyndjs]

So glad you've found the forum Clee1787 , it's a great place to share and get support. I echo the comments of others, and say a face to face appointment is best. I see my Haematologist every 3 months now, but also get a call every month with blood results from a Haematologist in his team. I've also been given an 24 hr emergency number for any support, all given out during a face to face.

Most of us, I'm sure, felt very anxious about our first face to face, very normal, although hard at the same time, waiting for appointment xx I'd suggest you write down any thoughts/ questions you think of, as it's easy to forget when in the meeting. If you can, take someone with you, it helps with remembering what's said too.

Please keep us updated. I'm still quite new to all of this but there are some very helpful people here, on the forum. We all value their support xx

[Strumin210]

Are you in the US or another country? It appears that doctors around the world especially here in the southeast of America think we don't need to know anything until the Doctor's come in the room. I would have the nurse call me and let me know why I have a face to face not wondering what it's about for two weeks. That would be stress I could do without. Hope you find out soon. Healing,peace from the deep south.

[NCB1983]

hi Clee1787

I understand how scary it feels but it’s great that you’re getting a f2f appointment, this will help to build your relationship with your care practitioner(s), who will be your point of contact as you navigate your way through your mpn. I too was worried about the haematology and oncology departments being linked but it makes sense. (I was diagnosed during covid and they moved haematology out of the hospital to a hospice, imagine how I felt going to my first appointment in a hospice!)

As others have said, this is a cancer with a little c and something you will live a perfectly happy and healthy life with. I refer to it as my “funky blood” and it doesn’t get in the way of my normal day to day.

Good luck navigating this journey

[Fieldsy57]

Some regular face to face is better in my opinion. If you also have access to your results on the `My Care` App then check it out and though much will not make sense it encourages you to understand your situation better and therefore be able to ask any questions over any issues that are concerning you. I always write questions down so I do not forget to ask at the appointment. I have also signed up to the Mithridate trial to ensure more regular face to face appointments occur. Cancer is a frightening word but try not to worry (easier said then done) as I have since learnt many are manageable and I hope that if you do have an MPN yours is one of them. Somebody must have told you about MPN Voice though which is good as you will get loads of support here if needed. Good luck 👍

[RedEye21]

It's a very manageable condition and face to face appointments are really good - with phone appt's in between.Try not to worry too much - I'm 79 and diagnosed just 5yrs ago. Take Hydroxicarbamide every day.