i did fall unwell quickly during one of the sessions. It’s difficult to say if my experience will be your husbands. We’re all different. But personally it was the right move.
I honestly don't recall how many weeks. However I am sure I couldn’t go to work because of infections. If he can afford to stop work or work remotely it’ll give him a chance to avoid risking an infection. But he has to live a life too.
By more than chemo checks, I had cladribine both intravenous and sub cut. They monitored me regularly throughout the intravenous. With rituxamab it was every 15 mins as you can have a quick reaction which they need to act on immediately. Plus every hour I think they increased the dose. So the nurse will be with you a lot, in my experience.
Your company should pay for a professional to do the occupational health assessment. An independent review, not a layperson in HR.
I just wanted to reach out to all my friends here. I don’t know if any of us are going to get a letter next week, and if we need to take on shielding. Nevertheless I imagine many of us will be understandably worried, even if not. I know this group helped me over the years and I hope we can pull together again.
Hi I'm unsure what to expect but am 6 years on from treatment and well. However, I'm doing everything I can to avoid contact as it's just not worth the risk.
We had some communication about rituxamab in the past.
What letter are you talking about?
What happened in the end was that in Scotland, the medical system is different and due to the cost, rituxamab in Dec 2019 was delayed.
The consultant could not get an OK - we asked him to get some info from consultants at Royal Marsden Hospital. He has agreed.
Since then we have been waiting. My husband had a consulation arranged this month but with covid-19, it was cancelled. The consultant said he would call, but we have not had it yet.
Meanwhile, his bloods results are getting worse.
So I am concerned- we are lucky enough to be feeling well for now, to be living close to beautiful nature in a quiet area. Needing to home school our boy keeps us busy.
It feels normal when we are in the moment, but when we think of his blood results, it makes us wonder about his health.
The letter I am referring to is the 1.5 million letters the government are sending to those at greatest risk. Leukaemia is included but unclear if those in remission will be included as we cannot be cured from HCL.
I hope your husband’s treatment is resolved soon for you.
I got the letter on Friday. I’ve been in remission since 2012. I know I had low pneumococcal antibodies. I suppose I’ve always been told I cannot be cured. I am lucky to have survived treatment 3 times. However this time it’s different. I have a child. We simply cannot distance myself from him. I need my husband with me.
I'm devastated to hear this. But miracles can still happen. When I was first diagnosed with cancer, they diagnosed Mantle Cell Lymphoma. The prognosis for that is not good to say the least. But I have a Guardian Angel watching over me. And a fortnight before my chemo, they changed my diagnosis to HCL. So fortunately I've had 10 years clear so far. So please stay positive. I'm sure you and your Angel can beat this. Try some meditation to clear your mind then send out thoughts asking for help. I would also picture the antibodies in my mind picture them increasing and attacking the cancer cells. Repeat this frequently because then your brain will instruct your body to do this. But most important - stay positive. Lots of love
It's been quite a while since I posted on here - life was going on as 'normal' until the dreaded virus spread like wildfire.
Yes, we all have to be especially careful to minimise contact - easy in some ways for me as I live alone, and the last week or so I've been using WhatsApp video calls to keep in touch with my daughters who live about 100 miles away, and being able to see them online in a video chat is great. and now we've started using House Party where we can have me, both daughters, and even my ex-wife on screen chatting away.
Regarding the letter, I've registered as vulnerable on the Gov.uk website last week, really in an attempt to secure a home delivery supermarket slot, which are like gold dust now. I have been taking an early morning solo walk at my local country park, well every other day - for about 45 minutes. Just saying a brief hello to passing dog-walkers or whoever is something - if we get a letter saying don't even leave the house for 12 weeks we could go stir-crazy - ok, I've started doing some more gardening recently, now things have dried out, and I could spend 30 minutes doing laps of my back garden - I reckon I could do about 150 laps in half an hour.... but would get dizzy!
Fortunately - I guess - I saw my leukaemia consultant 2 weeks ago, when my rather dismal platelets and neutrophils have shot up (but still way below normal) although my haemoglobin and overall white blood counts were down - my readings every 3 months are usually akin to the donkey's tail going up and down, often it's 2 up and 2 down. Anyway, the consultant wants to see me again in 3 months, that of course could be postponed with the pandemic.
As ever, we can but stay as positive as we can - in some ways I still can't believe I've had hairy cell leukaemia since 2003, over 16 years ago, and so far had just the one course of cladribine.
My name is Garret 46 years old and I was just diagnosed with hairy cell. I go every year to my family Dr. for a physical. Dr. found my platelets and white blood cells were low and sent me to a Hematoligist who confirmed. Crazy other wise fit and don't take meds for anything else. Need less to say I imediatly went into a panic attack and depression for a good week. My speen wasn't to enlarged at the time and my blood counts were low, but not to low. My Hematologist wanted to treat me with cladribine and rituxinab. I went for a second opinion at Sloan Kettering and my Dr. there enrolled me in a phase 2 clinical trial. The medicine is non chemo and is called verafinub and obinutzimab probably spelled wrong. They want to see if this treatment will be effective for a first line treatment anf avoid chemo. So far in other studies it is showing great promise. I start treatment tomorrow and am a little nervous and scared, but I have to get some sort of treatment.
