Ok, here goes. I have just returned home after my first CT scan revealed that all is not as I had hoped. I was diagnosed with SLL 2 weeks ago, and although that blew me away I now feel even worse. After my original diagnosis I was given an examination and given that I have no other symptoms (i.e. night sweats ,itching etc.) it was felt that I was very much a watch and wait patient, but was sent for a CT scan as is the norm. I am a male firefighter, 42 years old, fit as a butchers dog(or so I thought), and was totally happy with my life. The perfect family, as we are referred to by friends, and then BANG, out of nowhere our world is turned upside down, as only those that have experienced it can appreciate. Two weeks after my diagnosis I retuned to hospital for my scan results, a formality I assumed ,as the only issue I had was a lump under my arm that led me to the doctors in the first place. To then be told that I had other lumps beneath my diaphragm and that I will start FCR chemotherapy next week has really frightened me. I, like a lot of others out there no doubt, have no idea what`s coming. I have been given literature to read, and the hospital ward that are looking after me have been great, but I feel to correspond with people in the same boat as us can be nothing but beneficial. If any of you good people out there can offer me any advice it will be gratefully received.
just diagnosed: Ok, here goes. I have just... - CLL Support
just diagnosed
Hi sparkio
I am so glad you have joined the site - welcome....though sorry that you have had to join such a group.
I'm not at all surprised that your world has been turned upside down. After all, you have just received devastating news and you are probably still in a state of shock. It takes time for news such as this to sink in, especially as you were not expecting to be facing treatment so soon. It must feel like a double whammy.
As I am pre treatment, I am not best placed to offer any advice. However, there are many here who will find you and will try to answer any questions you may have and help you in any way possible.
You are amongst friends here and we all look out for each other. It's a safe place to talk about anything that's on your mind.
Warm wishes
sparkler x
Sparkler
Thanks for the response, I did not know if forums like this would be of any use to me, but after only a couple of hours my wife has been found to have been proven right . I am sure I will be able to use it as an inspiration in the challenging time ahead.
Best wishes Sparkio
Hi Sparkio,
I'm so glad you found this site, it has made a big difference for me as my husband went from "watch and wait" to "hurry up, you need treatment" this past July. The prospect of chemotherapy is very scary, no doubt about it, but I have to say that it's been much easier than we feared. My husband's had one FCR treatment and feels well...no hair loss, no nausea. Everyone responds differently to treatment, but relatively young age and physical fitness are factors in your favor. We're here for you!!
LAinNYC
Thankyou for your response, it is certainly a worrying time. I apologise for sounding a little subdued in my first posting, but we had just gone through with the awful task of telling the kids who are 15 and 12. To be honest, after the initial disbelief that I am sure we all feel, they have coped wonderfully. I will use there strength ,along with the knowledge that I am not on my own after speaking to other people who are in the same situation, and meet the coming months in the only way I know how , and that is with a positive attitude .By the way, don't know if you are in "The Big Apple" , but that wonderful city is our families favourite vacation destination in the world.
Regards Sparkio (Manchester UK)
No apologies necessary, you're among friends here, and yes, you now have support across the pond in the Big Apple!
You sound as if you have a very nice family that you can be proud of, and it is a great support to have them around you ..... things may have changed, but hey, you'r still Dad !
I had an eye injury which meant that I had to stop working aged 33 with a wife and two young kids, and overnight I had to give up being a breadwinner to become a 'househusband ' ...... things changed .... but I was still dad .... ( maybe I was too good ... they still haven't left the nest )
ygtgo
PS..... Manchester ... Utd or City ? .... My dad is a pal of Fergie ...they played together at St Johnstone around 1960
Neither a blue or a red, although I do have to watch united sometimes because of my son, I am actually a life long Bury supporter. It does have its benefits as I can actually afford to go to a game every week. Nice to hear from you, as the son of an ex pro who do you follow?
I prefer Glasgow Warriors RU .... But I don't get out and about very much ( other issues, not CLL) so as a living room supporter ... I'll shout ... AT ... Celtic / Scotland ... ( they never do what I tell them ) ... in English games, I prefer the Championship to the Premiership as the matches are more even, with each side believing that they can win ... oh and too many overpaid prima donnas in the Prem. I always took my boys to the lower league games or to Murrayfield ... I do have a night out to look forward to ... me old dad is to be inducted into the St Johnstone Hall of Fame in a few weeks ... I'll enjoy a wee night oot ... ( Maybe I should phone Fergie ! )
Hi Sparkio,
I'm glad your wife persuaded you to join this site. It's been a great help to me (and my husband, as I tell him things I've learnt here). So I'm sure it will be to you too. I was also given literature about CLL when I was diagnosed, but it's not the same as talking to real people who are facing (or have been through) similar situations to yourself.
I can understand how hard it must have been, telling your kids what's happening.
You say you're going to start FCR next week!! That does sound rather sudden, especially as you say you feel "as fit as a butcher's dog"! Nice phrase - I've never heard it before, even though we're in Sheffield - not so far from Manchester.
After six years of Watch and Wait, I've now been told my disease is "progressing" and I'll probably need treatment within the next year. They also said that the treatment will probably be FCR (or possibly R-Bendamustine). Anyway, I'll be very interested to hear how you get on, as will lots of people on this site.
Wishing you well,
Paula
Welcome sparkio
I'm sure you'll find not only warm welcomes on this site, but reassurance you are not alone, as well as help and advice. I don't have the knowledge to give advice re treatments etc.as I'm still learning and on W & W. However, I can share with you that many have come to this site feeling helpless, scared, and looking for ways to cope with the shock of it all. You and yours will find the help you need here, as many Cll/Sll'ers have a wide range of experience and knowledge which they share whenever needed.
No one would choose to need the site, but I'm sure you will soon be glad to have found it.
Very best wishes
Bub
Cheers for that Bub, this site could well be a godsend to me and I am sure many others. It sure does help when you know you are not in a one man club.
Hi Sparkio and welcome,
I think this link will give lots more information on SLL
macmillan.org.uk/Cancerinfo...
Regards England58
Cheers for the link, I have actually been on macmillans web site and found it useful, although if I am brutally honest I am seeking the impossible answer, and that is will I be OK. This is something no one can tell any of us, and as a new comer to our condition it is something that I know I must get my head around. But I am trying to.
Thankyou for responding, Sparkio
I would request a second opinion with a doctor who sees a lot of CLL and SLL, before discussing treatment.
There are a number of CLL specialist listed on this link...
acor-cll-help.wikispaces.co...
Hi ,thanks for your response, and to be honest I don't know what to make of your advice of a second opinion. I have been diagnosed with SLL although I have been told it is treated the same as CLL. Surely the medical team who have overseen my diagnosis and will be managing my treatment would not be steering me in the wrong direction? My situation seems to have happened over night but you can not argue, I guess ,with the results of a CT scan .They do show enlarged glands, above a certain size, above and below my diaphragm.
Hi Sparkio,
Glad you've joined us (and sorry that you had to) after Summer5 found this site and "introduced" you. As Quarry rightly says (SLL/CLL) "appears to be an almost unique path for each individual!", i.e. the disease expresses itself quite differently and what may be the best option for someone else may not be for you. That's a particularly good reason to seek the advice of a haematologist that has had plenty of experience observing how patients respond to different treatment options as well as knowing from experience the right time to treat.
You haven't mentioned how your SLL diagnosis was arrived at. Usually it is done by examining a biopsy of the swollen lymph node (the lump under your arm) and eventually it can show up in the blood, so a blood sample will show excess B-lymphocytes. In either case, a Flow Cytometry test is done to identify the distinctive markers in the B-lymphocytes that differentiate SLL/CLL from other B-lymphocyte malignancies.
Hence having that diagnosis confirmed by an expert in SLL/CLL will give you peace of mind that you are indeed being offered treatment for the right disease! Then getting another opinion that, yes you should be treated now, can also be reassuring. That second opinion might be that you wait longer for treatment and if that is suggested to you, then ask why, given your first opinion was to start treatment in a week. You can then weigh up which advice you are most comfortable with and proceed (or not) with more certainty.
There are a number of recommendations under the standard protocol on when to treat and your recommendation would be because of "Massive nodes (ie, at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.", that were identified in your CT scan. Hopefully you have a copy of the radiology report from your CT scan which should clearly state the size and location of those swollen nodes.
Does that help?
Neil
Hi Neil
I recall the doctor advising that she was surprised to see from the CT scan that I had some large nodes below the diaphragm,and remember her saying there was a large one deep in my pelvis, I don't however recall the size, though I will query that.
The diagnosis originally came from a biopsy I had due to a swelling in both armpits, but other than that ,nothing...
I was originally told that I was a 'watch & wait' but sent for a CT scan which is where the decision to treat sooner rather than later seems to have come from, the doctor said she was surprised with the results in that I did have other large swollen lymph nodes.
From what you have written, am I correct in thinking that treatment generally starts once the nodes reach a certain size, or other criteria is met?
Regards Sparkio
The full criteria can be found in the document referenced in the two Pinned Posts (on the right side of the Posts web page)
When to Treat
and
CURRENT CLL TREATMENT GUIDELINES - 2008
I've given you the posts as the replies could be interesting to you and your wife.
From what you've said, it is the large nodes that have resulted in the recommendation for early treatment.
Read the section Management - Indications for treatment; Table V lists all the criteria for starting treatment.
onlinelibrary.wiley.com/doi...
(This is an updated version of the above 2008 document with a slightly different presentation.)
Unless a large node is causing or likely to cause problems by pressing on an organ, nerves, blood vessel, etc, I can't see why a delay for a week or even a month or more is likely to be a problem, but then again, I don't have medical training, nor do I have all the information about you that your doctor has.
Hence the importance of discussing the recommendation to start treatment next Wednesday based on what you've learnt from this site.
Note that there is a great deal of misinformation about SLL/CLL on the internet, but if you reference the above document, then given that that is the recommended guideline that any reputable SLL/CLL specialist would work from, your question should not be dismissed out of hand.
Neil
Sparkio
Sorry to see you have to join us, but the group is a great source of knowledge and support.
I was only diagnosed (at 52) last New Year after being refused by the blood donation service (haemoglobin too low) - I had no idea I was ill! However, by luck, I have a top CLL specialist. And the two key things she has told me is first, the long slow progression of the disease and second that there are a lot of new treatments on the way/under trial. It is not like mainstream cancers.
So you are in for a marathon, not a short term sprint, in terms of the disease.....which is just as well as it takes ages to understand it! It appears to be an almost unique path for each individual! However what I have indeed learned is that there is indeed great optimism about the new treatments on the way - it is really an area of great change. AND, as the disease progression is slow, we will be around to use these new treatments!
Keep fit!
Quarry, you could not have timed your response any better, thankyou. I have been awake for an hour or two and as usual spent every minute ,so far, over analysing everything I have been told. I know there are thousands of people out there that are a lot worse off than us , but to be honest sometimes I cant help feeling sorry for myself. What I needed today was any kind of a positive, which you have thrown my way. Still new to all this and trying to get my head around what can only be described as a total mind****, please excuse my crassness but I could not think of another way to describe it accurately. Once again many thanks
Regards Sparkio
There is so much material...but don't over-analyse or it will do your head in. I took it in bite-sided chunks and only used/use 'trusted' sources like this one and those recommended here [there is a lot of wild inaccurate stuff around, particularly on US sites]. And I have asked my specialist/registrars loads of questions, which are patiently answered, over 7 visits since confirmed diagnosis.
After 9 months, I think I understand blood tests/results/consequences and the autoimmune path I have gone down (swollen spleen and steroid treatment). I have not dared lift lid on treatments - too much info for me at the moment!
So I would focus only on topics directly relevant to your situation: eg blood counts/consequences and treatment start. And as other people say, make sure you are seen by a CLL specialist. I have friends who are GPs and I already understand more about the disease paths than they do: as they might only see one or two cases and treatment is refereed to specialists.
Think you are spot on with that, I am terrible for over analysing and my need for information from what ever source I can find. I will definitely slow down and seek advice and info from specific places. Other than that I am starting to get my head in a better place and coming to terms with it all.
Best wishes to all you good people, have a great weekend, Sparkio
Hi I am sure we understand how you feel. I was DX at 50yrs and female so was unusual but not unheard of. I opted for a CLL specialist (look on the CLL support website) which was the right thing for me. It does sound like treatment is starting very quickly. Have you thought about a second opinion with a CLL expert? Best wishes
Hi Sparkio,
I was treated with FCR at Christie Jul12-Dec12. I was diagnosed in Jun12 totally unexpected. If you are Manchester based you may well be going there. I felt very relieved being treated there. I have CLL, not quite same as SLL but as you say, basic treatments the same. The most scary thing was the PET-CT scan my consultant showed me, including dimensions of a large mass under my diaphragm. FYI, in my scan in Mar13 at my post-treatment review no mass visible.
This forum is a good place to discuss views and ask for experiences of others, I see it as one of my 'safe places' for information. Importantly, you should find you are not alone. If I can offer one piece of advice, don't panic, check your facts every step of the way and ask if in doubt.
I'm sorry you have the need to be here, however, welcome, you are among friends, rob
Nice one Rob , thanks for the post, my treatment is being done at MRI and I have to say that from what I have seen, I am very happy with all the people there, and the manner in which they have dealt with me. You are absolutely spot on with what you said about this site. In a little over 24 hours,have learned so much, but, more importantly, been comforted by comments made by a vast array of fantastic people around the globe. Absolutely chuffed to bits to hear about your latest scan. From one manc to another, have a great weekend and all the best to you mate.
Regards Sparkio(but my actual name is Mark, am I allowed to put that on here, or should I be anonymous)
It's your (and your family's) choice regarding how much you disclose about you. Just be aware of the cost/benefit equation. Will information about your diagnosis adversely affect your employment or otherwise adversely impact you and your family's quality of life? Check out our latest poll for the experience of others on this site and the Privacy Statement for this web site (found at the bottom of the web page to help with your decision.
Neil
How exactly do you get to see or chose a CLL specialist within the NHS system? I could go privately but that is not always the better route with the NHS better equipped to handle emergencies if things don't go as expected.
For now I am sent to the local hospital by the GP and the person I see every three or so months is normally a haematologist...occasionally just an oncologist.
Whilst on the topic of lumps and bumps, my CT scan almost three years ago showed significant nodes in the chest and neck, swollen spleen, large palpable nodes in neck, armpits and groin. Hb has been as low as 10.5 but is now much higher at 12.5 and platelets hover between 55 and 70. WBC Is 24k. Still on w&w which may be due to only small changes between bloodtests.
Hi Mike I took advice from Chris (CLL Canada) on this subject and transferred to a CLL specialist from a general Haematologist. I am in the UK and found it very easy. I simply asked my consultant at the end of a consult if he would mind if I got a second opinion. He asked me who I had in mind, I told him the name of the specialist and gave him all the new hospital details. The next thing I knew was when I got a copy of a referral letter from the haematologist to the CLL specialist closely followed by a appointment and all on the NHS. Needless to say I felt more comfortable with a specialist who is involved in the new treatments that I asked to stay with her. I think I made the right decision, but you have to be comfortable with the consultant because you need to be proactive in your care and ask questions. I wish my WBC was 24K as mine is currently sitting at last test at a stonking 242K. other than this I feel fine with good blood results in all the other markers, which is odd because I expected to be feeling really ill. I expect that I am staring down a barrel of a gun and treatment is not far off, but seeing all the great people who post here who have had various treatments and are ok makes me feel very confident, but never over confident! Love to all Dave
Ok , apologies as I am very new to all this as I was only diagnosed with SLL on 22nd of August and have only been using this site for a day. As regards choosing an NHS CLL specialist there is a link( cllsupport.org.uk ) that I was sent by someone on this site. If you click on UK consultants on this site it will give contact details of them all. As regards your watch and wait schedule ,and what is involved, I really have know idea but you can be sure that somebody on this site will be able to give you some advice. Sorry I could not be more help, but I really am new to all of this.
Good luck to you Sparkio
Hi!
I was diagnosed with SLL in 1994 and I'm coming up to my 19th anniversary with this disease. As you are young and fit you should be able to go through FCR without too many problems providing you can stay clear of any infections. It may sound weird but SSL is one of the best things that has ever happened to me, I stopped worrying about all sort of things that aren't really important and concentrated on the good things and today. At the time my son was 18 months and I worried I wouldn't be there for him as he grew up. He's now at Oxford studying Classics and while there are still day to day hassles I find I can step back from them and appreciate how lucky I am and the good things in life.
I'm more than happy to talk to you off line about my experiences and how I've dealt with them.
Sorry me again, a lot of the people with CLL are very focused on their blood counts which generally are not significant if you have SSL,again if you want more information please let me know.
Thankyou TheFrog for your post it really is good to hear from people like yourself, and it has come at a perfect time. Its our wedding anniversary today, the last time I cried was 17 years ago as my stunning wife walked up the aisle, today I am crying for a whole different reason! On a downer today ,sorry. I feel like I have got on the wrong train and they wont let me off .
Hi Sparkio
You've been through a lot this last few days. May I suggest you take a break and that you and your lovely wife just concentrate on being together and do whatever it is that you enjoy doing together. Go into town, walk, treat yourselves, whatever. We will still be here for you. Its easy to get bogged down trying to asimilate all the advice. Take today off and
just be.
Love to both
Bub
Thankyou Bubnjay, your absolutely right. I am having today off. Its our time today and I will be back to fighting mode tomorrow I promise.
Hi Sparkio
I haven't posted on here before (I have ben a reader on the site for a long time) but thought I would because I think I understand a bit of how you are feeling. Not sure how SLL difers from CLL.
July 2010 we were away for long weekend with family and grandkids etc my partner felt really tired on Thursday, saturday neck swelled up and constant sweating, sunday couldn't work up the energy to eat or walk, we all came home as we were so worried. To cut a long story short following investigation by GP for glandular fever etc 10 days later admitted to hospital, diagnosed cll, all the tests diagnosed stage 3. He had to go on steriods to get rid of all swellings and month later started on FCMR (clinical trial).
What a shock (is an understatement). My partner went from the fittest strongest person I knew to someone who could barely walk to the kitchen and back. He started chemo and (full day at hosp then rest of week on tablets to bring home). Wasn't great but not as bad we thought it would be (we fairly positive people) day of and day after intravenous treatment was usually ok next day was always worst then getting better. 3 years later consultant has just advised that bloods have started double again and we now on increased conultant visits as was advised he will need to go back on chemo again.
My partner never reads anything about CLL and relies on me to tell him (I think he finds it hard as he always sees the negative side of written articles) so well done you for joining. Life as a partner of someone with CLL is not always easy and if your wife wants to message me i will respond. Things never returned to how they were for us but life is good and we live it to the full. We were outdoor active people before and still are. Keep positive as we are sure positive mental attitude does help.
Hi Immie , thanks for taking the time to reply, I know you said you have not posted before but I have found it quite therapeutic to sit down and get everything off my mind on here .Best wishes to you and your family, and yes , staying positive is so important.
Regards Sparkio
Sparkio i have jusst been diagnosed with CLL at the Royal Bolton Hospital i see your not far from me would we be able to make contact by phone i am keeping this under wraps at this stage because of my job i will have to come out with it next Thrursday 4th of June 2015 as i think i am at the stage have to start treatment
Exchange your phone numbers/contact details via Private Messaging:
support.healthunlocked.com/...
Hi AussieNeil I Have sent me details via PM was it ?? Hope so new to the site please advise
Hi Brian, because PM's are secure, only the people that you address them to can read them. For a community admin or HU admin to be able to read them, you first have to add them as a recipient.
It has been a year since Sparkio has been active:
healthunlocked.com/sparkio/...
so you may not hear back from him, particularly if he has changed his email address.
To check you've mastered the PM system, try sending me one.
Neil
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