Hi my name is Mary (Majo), my husband was diagnosed with SLL in February while in hospital with pneumonia and other things. He was extremely breathless in hospital, and still is. We were supposed to have a Thoracoscopy on the 9th April but that got cancelled because of lack of beds.
Since coming out of hospital, he has continued to lose weight. Weighing two days ago 11stone 7lbs, from a stocky 15stone. This worries me and reading some of the posts sounds like he is now developing CLL. Would I be right? I am everso worried about him. Hes looking quite frail now. We are waiting to hear. Thankyou for reading. I dont know whether I should ring the hospital or wait and see. John is quite stubborn and says wait even though his weight seems to be diving quite quickly.
Any advise for a worried carer would be useful. Thankyou.
Hi Mary and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your husbands diagnosis and ongoing challenges.
I am Mike Thehighlander and I look after our blood cancer groups.
My story is rather long (see my profile) but during my NHL journey I lost 27kgs leading up to my main treatments in late 2013 so this is not unusual.
Your question about SLL transforming into CLL is truly a question for your husbands medical team so you do need to talk with them and get a clear understanding of what this road looks like.
Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service and this is their SLL/CLL information.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
((hugs))
Thank you so much Mike, you have been so helpful. I'm very new to getting around the on line Macmillans so my messages seem to be all over the place, but you found them which is much appreciated.
I will check out the Action Group. Thankyou. I'll let you know how I get on.
Mary
You will get your way round the site, it’s a big place cover most cancer types.
If you want to see all the posts you have put up or posted on hit YOUR community name and look for your activity - most likely under ‘more’
