Good morning @Gillyj and @Erica along with everyone else. I too have been doing a “Marcel Marceau” and been in silent mode for too long too! (Far too many “too’s” there!)!!
First the good (ish!) news, my headaches seem to have stabilised a little bit although they are still a weekly happening. Right, that’s the good news dealt with; now for the less good news.
The tiredness seems to be building, accompanied by poor sleep quality, and I’ve also had a few unexpected (and unwelcome) bleeds both above and below the skin; something else to discuss with my team in a couple of weeks time.
Then, for the “Piece de Resistance” Saturday’s post brought notification of my Landlords intention to sell, giving me just under 9 weeks to find a new home. In all honesty I could have done without this “swift kick to the gonads!” having been here for over 10 years now. Still, it is what it is and the move will force me to commence my “downsizing” before my daughters have to do that in the years ahead"!
Other than that, everything is hunky-dorey.
As always my Forum Friends, take care, stay safe, be kind to yourselves and keep on smiling.
It never rains but it pours!!! That’s awful news about your house, what a bummer!! But good that headaches are less, not so good re bleeds! When do you see them again? Have you mentioned it to anyone on your team?
Firstly, I am glad that the headaches appear to have stabilised.
However, the tiredness, poor sleep and unexpected bleeds are not so good.
As for the 9 weeks notice from your landlord, grrrrrr, however in my book downsizing is a positive thing.
Good luck finding a new des res, what a hassle.
@Gillyj, @Willow@Duncan@Lou-ET@Christie how are you all? I am doing OK busy Tuesday this week with appointments about the tumour on my kidney and then pre cancers bits on my face, then haircut on Wednesday.
Missed you my forum friend, @Jimbo165 good to hear from you.
Look after and be ever so kind to yourselves everyone
I did have a bone marrow biopsy and aspiration but my hematologist was disappointed with the results and I sense wasn’t happy with the hospital. He will send me to a private hospital to do it next time. The results didn’t find any fibrosis but anemia and megakaryocytes, thrombocytosis. My next two cbcs showed rises in platelets also 3 other things that pointed to him still thinking I have some fibrosis happening, albeit in early stages. He’ll know for sure after the next bone marrow biopsy whether it’s primary myelofibrosis or Essential thrombocythemia (ET).
Living in Egypt can be difficult due to lack of knowledge with MPNs. My hematologist is brilliant but anyone outside of him hasn’t got a clue this type of blood cancers exist.
I have noticed since being on the Hydrea, aspirin and uric acid treatment I have terrible leg aches, arm, shoulder and lower back pains. Headaches and a bit of dizziness and sore throats, the list goes on.
I’m trying to drink more water! Cairo weather has been in the high 30’s and 40’s this summer so I’m doing my best to keep hydrated!
Hi @Lou-ET , not easy being in Egypt as you say! At least you have a good haematologist, makes such a difference to have faith in someone.
I opted for pegasys rather than hydroxy but if it’s anything like my treatment it took a good 6-9 months before my body adjusted and I started to have more energy etc.
Hi @Erica - the hair appointment sounds the best bit of all your appointments!!! sorry to hear about the kidney/ are they going to operate? I too am having a lesion removed from my forehead in October- I think it’s a BCC, but apart from that I’m well thanks.
Hi Erica, apart from a whole lot of tiredness and various body aches I’m not too bad. I must say I have headaches daily and throat irritation but with Gerd and mild Barrett’s esophagus as well I never know what’s one disease or Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) symptoms!
I’m sorry you have a tumor on your kidney and skin cancers going on! I do hope you have these issues resolved quickly and with as little pain as possible.
I was warned by my hematologist to take care in the sun. It seems an impossible task! I live in Egypt and work for a school, part of my role includes playground duty. The management put me in shaded areas and I wear factor 50 as well as a large sunhat.
Take very good care of yourself and keep us updated with how you are getting on
Oh @Erica I’m so sorry that you’re going through even more testing and treatments for that tumour as well as the facial stuff. Perhaps you’re a pro at this now but I’m sure it can still feel worrying and the appointments themselves rather intrusive I imagine. I hope you’re bearing up well, have you been on any nice distracting albeit short walks to help you take your mind off stuff recently? Time to drop some hints for some nice day trips with loved ones? I’ll be thinking of you this week
Thanks for asking after me, I’m doing well. My own tumour is behaving and responding well to its medicine, the little b*gger. Just getting over my first infection since diagnosis with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) and it’s passed so uneventfully, and without any need for hospital or medicine, so that’s given me confidence that my immune system is still functioning! Training our new adopted little dog is going well too, he’s such a joy to spend time around, and rather hilarious with his big dog energy despite being so tiny! We took him camping recently and he loved all the smells in the redwoods
Dear @Jimbo165 just seen that you need to move, and after so long in your home. I know how stressful that can be, so please look after yourself and try not to overdo it. Maybe if you can’t find the perfect place to move to right now with such short notice you can find an adequate one and put your belongings into storage until the right home becomes available? I’d check local rental laws in case you’ve been given too little notice to move, or there’s ways the local council can support your move. Thinking of you, I suppose at least it’s not in the midst of winter!
Oh and hello again @Lou-ET, I’m so glad you found @Jimbo165 and @Gillyj and this thread as you can seen how they and others live with Essential thrombocythemia (Essential thrombocythemia (ET)) and share such great information.
Hi @Erica , @Jimbo165 and all the others following this thread
I haven’t been checking in for the last few weeks and have just caught up with everyone’s news.
I have been having problems with the Besremi side effects since the doses have been closer together. I did make a diary of things to see if there was a pattern and realised my issues with stomach problems were definitely appearing in a cycle. they have also been getting worse with stomach cramps and diarrhoea a few days after injecting so i emailed my consultants PA. about anything i could take to sort out my problems. I have already taken glutton and lactose out of my diet and restricted any food known to cause wind and bloating . I now have an email that she wants more blood tests done which is now worrying me. Probably just generally feeling down as feel so rough so overthinking everything.
sorry just rambling and getting it of my chest. I am sure everyone has there own problems and i hope you are doing ok now.
Good evening @Crispy, @Duncan, @Erica, @Gillyj and everyone else reading this line of thought, I hope that you are all as well as can be which, I know, is quite a low bar in many cases, mine included!
I have been on Besremi injections, 125mcg every 4 weeks, for about 7 months now and I definitely feel more lethargic, with outbreaks of apathy much more frequent now too, not helped by my recent Section 21 Eviction Notice. I have managed to get the two months “grace period” extended to 3 months which will give me a little more breathing space to find my “new” dwelling without feeling that I have to “grab” the first available place regardless.
Healthwise, I am soooo tired and suffering from yet more gum infections, proof, of prrof were needed that Besremi is an effective Immunosuppressant! I also seem to be developing some little clusters of lumps and spots, usually in the most inconvenient of places!
Dear @Erica, I hope that you are keeping well and that your appointments this week have been good ones for you, with no further “bad things” occurring!
As always, my Forum Friends, stay safe, take care, be kind to yourselves and keep on smiling.
As you all know I am not a medical person, but I feel you need a really good MOT by your medical team.
The other issue you have is one of the most stressful problems you can have and that is your eviction notice and pressure to find somewhere else to live. I find my stress is emotionally, physically and practically exhausting and we are living with blood cancer and are immunosuppressed as well.
And there you are concerned about me as well. The tumour on my kidney is stable so is being monitored again in 6 mths. The minor op above my lip went well and the stitches will be removed in 8 days. My GP froze another area on my central top lip. I was told to keep the areas dry for 8 days. I started walking home in the sunshine and suddenly the heavens opened and I got dripping wet. We hadn’t had any rain for weeks. My husband said what’s happened as the sun was out again as I reached home. By the evening when the anaesthetic wore off my nose would not stop running which was a logistical problem. Now I find it really difficult to drink my hot chocolate without leaving a chocolate moustache.
@Jimbo165 perhaps I will keep smiling if you really take care and be ever so kind to yourself.
Sorry to jump in but just wanted to say how relieved I am by your news dear @Erica, or at least that it sounds like the operations went well. Selfishly it’s helpful to know what I might expect if I ever need a similar procedure due to being photosensitive from the chemo I take. I’m mostly glad the surgical part is over for you, although I really hope the healing passes uneventfully. Smiling at the image of your hot chocolate moustache, I’m sure it’s ever so fetching!
Dear @Erica - it sounds like you can laugh at your situation which is the best tonic! Glad kidney not being naughty!!
And dear @Jimbo165 - I fully second what Erica said and feel that your medical team need to step in and assess you- it must be all very depressing for you especially as you’re having to find new lodgings but as ever you seem to have kept your sense of humour- a lesson to us all!! I wonder whether your local council can get involved especially as you are technically disabled?
Keep posting as I think talking to us on the forum does really help to know others are with you
Good afternoon dear @Erica and everyone else trawling through this particular thread, hope you are all well. Of course we are all concerned about you Erica as you have been a golden thread running through so many of the lives of so many Forum Friends for a good number of years now. You are part of the “fixtures and fittings” for many of us, even if this does mean (in my case!) that you will be moving in the next couple of months! I really do hope that you are taking things easy, well, easier, than you have done and are devoting more time to yourself too.
Friday night was Besremi night for me, so I’ve tried (without any success whatsoever!) to rest and take things easy this weekend, but keeping mildly busy keeps the rubbish feelings somewhat at bay.
I still get a lump at the injection site and wonder if any other Besremi users have this immediately after injecting? The lump is still there as I type (with both thumbs and 4 fingers, not bad for an aged trucker!) and a small crop of tongue ulcers have made an unwelcome reappearance since Friday night too.
I am back to see the team at LRI on the 12th of September so will hopefully get some answers/advice/guidance then.
In the mean time, take care, stay safe, be kind to yourselves and keep on smiling.
Erica i was told i had a kidney problem a few years back after repeated scans it disappeared. very odd but a big relief. I hope yours stays stable and is not causing you too much stress.
Jimbo i haven’t had any lumps after injecting but i have been feeling worse and worse after each injection and very little move in platelets. My most major problem is stomach cramps. Just shows how we all react so differently to each other. I do feel more tired too. Additional blood tests didn’t show any new problems so i have been asked to move back to a 3 weekly injection rather than the 2 weekly. I have an appointment in London on the 22nd so will see what is said then. I did ask about going back on pegasys but they want to exhaust remedies of besremi side effects instead with the option of pegasys if they can’t. The only benefit is i am eating very little so i have lost a little weight. Good in the short term but not sustainable.
I have thought about your question about medical diagnosis feelings of stress and really honestly I think I am getting really numb to medical things now.
I completely went into shock after 50 yrs of very good health when I was diagnosed with an ‘severely’ abnormal cervical smear result and then soon after I had the op for it the gynaecologist told me me that I had ‘chronic’ lymphocytic ‘leukaemia’. I use the ‘ ‘ marks as those were the words I saw in large zig zags in my mind.
Since then I seem to have been diagnosed with many conditions, some more serious than others, and I appear to be sort of numb to them. However numb is a default mechanism for me. I don’t fight or flight.
Yes, my kidney tumour has stayed stable for the last 6 mths.
P.s, I eat on every emotion.
Let us know how you get on on the 22nd and take lots of special care of yourselves
Good morning @erica, @Chrispy, @Gillyj and everyone else, hope you are all as well as can be. Erica, I am glad to hear that your kidney tumour has remained stable for the last 6 months or so, and hope that this will long be the case.
Chrispy, I hope that your stomach cramps aren’t too debilitating and, but am sorry to hear that you too feel worse whilst on Besremi, although it does indicate that it isn’t “just me”! I hope that your appointment on the 22nd goes well for you and that you are able to either revert to 3 weekly Besremi or to go back on to the Pegasys, assuming supplies have been restored now.
Gillyj, I will attempt to speak with my local council this week and see if they can offer any solution to my impending “enforced home change”, as I have this next week off work, so will be able to begin my downsizing exercise. I will find it very difficult to get rid of many of my books, especially reference ones, although I am an avid Kindle user for fiction these days.
For myself, my latest gum infection finally got the better of the Corsodyl and I had to make an emergency appointment with my dentist. The outcome of that is that I am now on a course of antibiotics: last Thursday was an interesting cocktail of medication with my Hydroxicarbamide, the antibiotics (Metronidazole) and some paracetamol. I slept very well that night!
Other than feeling so very tired I am okay-ish, I think.
Meanwhile, and as always, take care, stay safe, be kind to yourselves and keep on smiling.
Hi @Jimbo165 glad you’re finally on antibiotics for your gum infection and it sorts it out quickly! Good luck with the council- let us know. That’s sad you’ve got to get rid of loads of books though.
@Chrispy will be interesting to hear if pegasys is being given out again - I do hope so/ I dread each telephone conversation waiting for them to tell me that I can’t have any more!!
sorry to hear about the kidney/ are they going to operate? I too am having a lesion removed from my forehead in October- I think it’s a BCC, but apart from that I’m well thanks.
it sorts it out quickly! Good luck with the council- let us know. That’s sad you’ve got to get rid of loads of books though.