Oh bugger, please come and talk to me about leukemia and/or chemotherapy

[pushmepullyou]

I'm going to try to keep this fairly brief, but apologies if I ramble on a bit as I'm very worried.

DH's brother who is 42 was rushed into hospital a couple of weeks ago with haemolytic anemia caused by an enlarged spleen. He's had his spleen scanned and that's all OK, but they think he has Chronic Leukemia (CLL), which you don't usually get until you're much older. So far all his tests have come back 'inconclusive'

His anemia isn't being controlled by steriods or transfusions and he's really ill. They are starting him on chemo tomorrow and have asked DH to go in to have his bone marrow typed.

Now obviously all this would be a lot for anyone to cope with but BIL doesn't deal with things very well. He is single and still lives at home, but comes across more as a teenager than a middle aged man iyswim. He finds his parents very difficult to relate to and DH is the only support network he has. Likewise he is DH's closest friend, and DH is very protective of him. He finds any sort of physical discomfort or unexpected sensation very difficult to deal with and also finds it hard to cope with any changes to his routine.

I'm not sure where I'm going with this, but basically I have no idea how BIL or DH are going to cope with this or how to support them. No idea what's going on or what's going to happen next.

Would really appreciate a bit of handholding and/or advice if you've managed to read this far.

Sorry to post and run, but I've got to pop out for a couple of hours. Will be back later thouh

Hopeful bump

So sorry to hear your news, not sure I can help at all, but couldn't read and run.

Is your BIL on the autistic spectrum? I work in the field and his dislike of disruption of routine and dislike of new sensations sounds familiar.

From what I've read you can have a life expectancy of up to 25 yrs with certain CLL types.

Good luck with the treatment.

Thanks so much for replying. He's pretty ill tonight as they can't stablise his red blood cell levels. He keeps having transfusions but they're not working :(. His blood count is below 5 when it should be 14. Apparently it's a type of CLL the consultant hasn't seen before

He's not officially on the autistic spectrum, but I suspect that that is what the problem is. I don't have much experience of ASD, but know a fair bit about the ADHD spectrum and it definitely seems to be something hardwired in him.

Is there any way we can help him cope better?

Hi You could try talking to the nurses about how he likes routine and hates unexpected things.
They may beable to tailor the care they give and ensure he knows what's happening when.

That's a good idea, although he would be mortified if he knew. The ward sister said to him today 'you're a bloke that appreciates straight talking - the problem is obviously that you're losing a lot of blood from somewhere'

Now apart from the fact that despite appearances to the contrary he is not someone who can handle straight talking, his consultant has assured him over and over aain that he is not losing blood and that the anaemia is a different type. He is now completely panicked again, poor man .

I agree with ggirl, talking to the lead nurse and explaining his likes/dislikes would be helpful, maybe something could be noted on his notes so all dealing with him are aware. Some sort of timetable may be good so there are no surprises. The trouble with hospitals is generally nothing ever happens when its supposed to. Maybe you can talk to him about meal times and shift change times so he has some idea of what to expect? The trouble is that you aren't in control in this type of situation.

Sorry his CLL sounds so complicated, hope they can get to the bottom of it soon. I had a count of 5 or so after I had a massive bleed post c section, felt like I'd been runover so he must be feeling dreadful.

Hi there. My H has just gone through a year of intensive chemo for a type of Lymphoma.

If I could give any advice at all, it would be to try to encourage him to relax and trust the doctors. With any cancer, they have to do certain procedures on the spur of the moment, and H simply ended up resigning his body over to them. I had huge admiration for him.

However, this is a very hard thing to suggest to a person that likes such routine. The upside is that chemo treatment is run to a strict schedule. Could you get details of his chemo and type of chemo (eg IV/ lumbar puncture) in advance and help him chart it out? That way he can easily see what is coming next?

He can then understand how his body reacts to each treatment and learn to deal with the after effects.

Thankyou pleasereassure, that's really helpful, and not anything I would have thought of. I don't really know anything about chemo, other than the traditional stuff ie it makes you tired and sick and knackers your immune system.

Do you have DC at all? How did you deal with illnesses/colds etc? He would like to come and stay with us on and off I think, but we have a toddler (who he adores) and I'm not sure he will be able to be around her in case of infection?

Sorry, I can't believe I just posted and didn't ask you how your DH was doing? I hope the chemo has worked well for him

Ok my DH has CML which is very simular to CLL, they are part of the same types of cancer. Hers is a very good site www.leukemia-lymphoma.org/hm_lls

now, is he in local hospital?? If so get him transferred ASAP, we have leant that alot of local hospitals arent used to dealing with these types of rare cancers and so treatment isnt always done as it should. DH is heading to Hammersmith as they have the best leukemia cance rin europe but we have had a terrible time getting there.

He may be scarced and thats normal but CLL is slow growing and not aggrressive unless its been out of control for a while.

Now with the children it depends on his treatment and also his blood results. Any infection in the next few weeks while bloods are unstable are best avioded but TBH we had DD2 who was 18months when DH was dx, so they cant always be avioded.

Both our girls are autistic too so we have to plan for changes which isnt always possible but I would recommend to you that you explain to the nurse/doc that he needs to know whats happening and maybe needs it written down too.

If you need anything let me know and hope his doing better tonight.

Lisa thank you so much for replying, I read about your DH a few months ago I think, but unfortunately I'm pregnant so haven't been able to sign upto the bone marrow register so far.

Glad to hear your DH is in the right place now. How did you manage to get him referred? We are in Yorkshire, but sure we could get him to wherever is best. I'm not terribly reassured by the doctors saying it's a type of CLL they've never seen before, and can't help feeling that we should be finding someone who has seen it!

He's pretty down at the moment, but I'm hoping he will feel a bit better when they manage to stabilise his red count. I think it's a bit confusing as although the CLL is presumably slow growing the haemolytic anemia is acute, so he needs very urgent treatment at the moment.

Hi PushmePY

Just wanted to send you my best wishes for your BIL. I have just been through 11 months of treatment for breast cancer, including ops, chemo and radiotherapy so I do sympathise.

As already mentioned, chemo is often to a strict time-table, which might be helpful. The side effects in my case ,and for many others, are unpleasant but manageable. For example, after the first cycle, you have an idea how ill oyu'll feel and for how long. In my case I tended to feel pretty ill for 2 days then slowly come up over a week, then had time to feel reasonable and recover in time for the next lot 3 weeks later.

Its important to understand that everyobne is different, so I suggest that BIL keeps a diary of how he feel daya by day, once he starts treatment as the pattern is often similar each chemo cycle.

I think the nurses would appreciate you advising how he tends to be, and in any case they are very thoughtful and do explain very carefully what is happening in my expereince. But your BIL will need someone with him for treatments.

PersonaLLY |i KEPT WELL AWAY FROM ANYONE WITH A HINT OF A COLD while I was on chemo. as I did get an infection early on and really didn't want any more to deal with. But otherwise I walked/read/gardened and saw people whenever I could - which helped me a lot. It might be an idea to get your BIL into a routine of regular walks on his good days as I found this helped with nausea, morale and just overall feeling I was still able to exercise gently.

Hope this helps a little. And good luck to you and your family. Its tough butI'm sure you'll get through it.

Thank you sandripples, I really appreciate you taking the time to talk to me. I hope you are doing OK now?

I think a diary will definitely help him keep things clear in his head. Unfortunately he has had to have his first treatment on his own as he doesn't want his parents there, but DH is going over to see him this afternoon (we are not very local to the hospital). DH is going to go to his next clinic appointment with him as well, so hopefully that will help too.

I definitely think he will find things easier once he knows a bit more what to expect from the treatment. I'm sure it will help if/when they manage to give him a firm diagnosis

have they given you any idea of long term treatment?? Becuase its a chronic condition he may have tablet chemo which is easier to handle and has less side effects. However if they go for a bone marrow transplant it will be IV chemo has is the horrible one that makes you lose hair and being sick :(

How is he today?

He's started tablet chemo today, and is on that for 6 months along with a drip of something else that he doesn't know what it is, but sounds like immunoglobins or similar from his description.

They do want to do a bone marrow transplant though I think following the chemo, they have sent some samples off for tissue typing and DH has to go in to see if he is a match. Not sure what the chances are of a match off the register if he isn't though.

They would let him come home if they could stabilise his Hb count, but it's too risky at the moment given the rate it keeps dropping. He's just in such a state, nearly hysterical on the phone to DH

Yes thanks. I'm doing OK and just have to learn to live with uncertainty now as once you've had cancer, there is always the chance of it returning. But I'm doing lots of nice things before I go back to work.

I do hope the blood count stabilises and improves for your BIL.

took DH a weel to stable his bloods enough to come home a the point of dx. Have they taken bone marrow for testing or matching?? DH has his taken every 3 months for testing but not for matching but some hospital like to test for a match straight off to have it on hand if needed. DH wont have a fmaily match as he doesnt have a full sibing.

He'll properly start on 2 chemos, one will bring bloods back in order but has little effect on the cancer itself, and the other will kick the cancer. Once bloods are back he'll stay on the cancer one.

Is there anything her needs? DVD player? somethingto keep him busy?

He had bone marrow taken for testing 2 weeks ago. The full results still aren't back yet , but those that have come back are 'inconclusive', whatever that means. He had a sample taken for matching today as apparently it will be much harder to do once the chemo kicks in.

I understand there is only a 25% chance of a match anyway with a full sibling, so we're not over optimistic that DH will be a match.

It's so frustrating as they told him they we 90%+ certain it was CLL about 6 weeks ago but don't seem to be any further forward. He is obviously worried that it is something more acute, particularly his spleen is very enlarged and the steriods he has been on for the anemia have stopped working, hence being back in hospital.

A DVD player might be a good idea. He doesn't want any music or reminders of home as he finds it too upsetting at the moment

Thanks sandripples

Please get him to a specialist hospital ASAP. They should know what they are dealing with by now and if not they should find someone that does. Hospitals never like to refer elsewhere as it costs them loads and also they dont like to lose the rare learning cases either
Bone marrow results normally take 2 weeks for DH.
If it helps DH spleen was huge you could see it poking out of his tummy, and his liver was enlarged too. He also had huge amount of white cells at 414 (meant to be 9-13).
Will see if I can find your local ish specialists names ect, I only know the london lot.

Thank you so much Lisa. I think BILs white cell count was 26, so not that high, but the haemolytic anemia doesn't seem to be stabilising yet and it's been going on for over a month now so it's a bit worrying.

I think we will try and get him looked at somewhere else, but don't really know where to start looking. If you could point me in the direction of any useful lists or anything that would be really helpful.

Arse - his RBC count is down to 5.8 again today after a transfusion that brought it up to 10.8 on Monday.

That seems like such a rapid rate to be losing red blood cells at :(

Sorry to hear his count's dropped so low, he will be feeling really poorly with such a low count. Have they decided what they're dealing with yet? He really should be in a specialist unit who know what they're dealing with and how to deal with it.

Hope he feels beter soon.

Thanks Vev,

I think we will look at trying to get him in somewhere else once the anaemia's stabilised (assuming it does), but until then there's nowhere really local enough for him to get to most days for blood tests and transfusions.

It seems so disorganised though. They let him go home yesterday without checking his bloods and told him they would see him on Friday. He started feeling ill again this morning and went back in at lunchtime. He needs 4 pints of blood tonight before being discharged and they haven't even started the transfusions yet (the blood hasn't arrived from Leeds apparently ). This means he's going to be discharged at about 4am. Also because he was discharged yesterday there isn't a bed for him in the haematology unit and he's just hanging around in A&E, which can't be ideal from an infection control perspective.