Watch & wait with CLL

[trswarranty]

Hi

I have posted on her before about my husband having being diagnosed with CLL back in July 2017

His bloods have always been perfect we found his CLL because his lymph nodes we raised and we went to the doctors about them...anyway

All scans came back ok apart

From raised lymph nodes his spleens is ok to

Every time he goes for his checks his bloods again are always perfect

However he had a water infection for a very long time that he couldn’t get rid of and is now on a very low dosage of antibiotics permantley to keep it at bay

I worry that his CLL specialist isn’t looking at all aspects just because his bloods are perfect she doesn’t check anything else

My point is we found out about his CLL through a biopsy of his lymph nodes not through his bloods you wouldn’t know about any illness he has if they look at his bloods because they have always come back great

Do I need to get them to do further test to make sure my husband isn’t getting worst or would his bloods definately Show something untoward if he was getting sicker

My husband suffers anxiety and depression and it’s not always easy

To talk about his illness with him

[Spacee]

Hey! I really don’t know what to say since I am not a medical person. I think for his anxiety and depression, getting outside for walks might help some. And it would be good for his immune system. It sounds to me that all the medical tests that are appropriate have been done.

Hugs,

Linda

[trswarranty in reply to Spacee]

Thanks Spacee

[mariemascio]

Hi trswarranty -

I was diagnosed with SLL in July 2017 based on a lymph node biopsy, also. Like your husband, I also have "normal" blood chemistry and clean scans . . . that could change (many years in the future, I hope!) but for now I'm celebrating having good blood numbers and a healthy spleen. My oncologist did my bloodwork at three month intervals since diagnosis, she's backing that off to six months because there's essentially no trend, which is great. Are you guys plugging your husband's numbers into a spreadsheet to see what's going on yourselves? I'm a numbers nerd so this gives me some sense of order and control . . . I linked an example spreadsheet below. My oncologist said to make sure I get regular consultations with my GP keep an eye on stuff like cholesterol, hypertension, diabetes, etc. I guess my point is, is your husband also taking his concerns to a general practitioner? A CLL specialist is a specialist, and if everything looks good with the CLL she might not see any problem she can fix.

I'm sorry that your husband is suffering from anxiety and depression. That stinks, although it's perfectly understandable. This diagnosis might still feel really new for you both (it does to me!). I saw a good therapist for awhile, and she helped a lot. (and even if your husband doesn't want to do therapy, maybe it could help you out). And I'm trying to do other stuff to improve my peace of mind like mindfulness practice and (as Linda says) trying to get outside (or to social events) on days when I might just sit in front of a screen instead.

Congratulations on your husband's good blood numbers, may they continue that way for a long, long time! And (if) we need treatment in the future, there's a good chance that there will be safe and definitive therapies.

Take care,

- Marie

Edit: here's that spreadsheet, it's at the bottom of the page cllsupport.org.uk/cll-sll/s...

[trswarranty in reply to mariemascio]

Hi Marie

Thank you for replying it really is good to know that your diagnosis was the same

From the biopsy they also worked out it was CLL and not SLL which we thought it would be because it didn’t show in the bloods

Yes he does go to his GP for anything untoward they are really efficient

We have never seen his bloods chart to be honest it’s it something that we’ve been offered to look maybe thats a UK thing I’m not sure

Although we’ve never asked maybe we should

To give my husband a better understanding that’s its far from over

I’m trying to get him to be more active his inoculations are all up to date .

Al the best and I’m really glad your bloods and scan are behaving themselves also

[MsLockYourPosts Passed Volunteer]

Some patients show signs of CLL in the blood (CLL) while with others it will show up more in the nodes and possibly spleen (an SLL presentation - though it is the same disease and treated with the same drugs if treatment is needed). Patients can have stable disease for very long periods - sometimes their whole lives. If he were getting worse it would normally show either in his lab work or in the lymph nodes - not necessarily both.

Since your husband is dealing with an ongoing infection you might want to have his IgG level checked (has to do with his ability to fight infections). It sounds like he is one of the lucky ones who's life won't be impacted much by his CLL medically, though all of us also have to deal with the emotional side of hearing the diagnosis. I hope you can find the right way to help him, and yourself, through that.

[trswarranty in reply to MsLockYourPosts]

Many thanks for your reply

It takes a while to get

Your head around this illness I must say with the watch and wait but I try to tell me husband that’s a good thing and hopefully he may never need to move past watch and wait like some of you guys do

Everyone on watch and wait has to go through that traumatic time when you have to have your bloods done and you don’t know whether their you’ll have to be treated or not next time

It’s not nice for anyone sanity

At the moment they are trying g to control a water infection he has had for over 6 months they have kept him on a low dose of

Antibiotics to try and

Keep it at bay because it kept coming back

Anyway one day at a time

Many thanks

[MsLockYourPosts Passed Volunteer in reply to trswarranty]

I've learned not to assume anything. Has a culture been done to be sure your husband is on the best antibiotic for his infection? A low dose of the wrong thing, instead of hitting the infection with an antibiotic that has the best chance of being effective, can prolong things or make them worse.

[trswarranty in reply to MsLockYourPosts]

Hi

Yes they have done that and he has been on strong antibiotics 4 times now

Each time it clears up, then it comes back, so they have decided straight after the strong antibiotics he has to take a lower dosage for the foreseeable future

[TheFrog]

Hi,

I've had SSL for at least 24 years (diagnosed as stage 4 in 1994) and from the details you have given I would suggest your husband has SSL rather than CLL. I know the Doctors consider it to be the same disease but to the patient there are differences. If you have been on this site even for a few months you will know that those with CLL are very keen on plotting their blood counts as it gives them some idea of progress and possibly control. Those of us with SSL are generally in the dark about what is going on as the status of the disease can only really be checked by CT scans and BMBs. It took me a long time to see this as an advantage but that is now how I now view it. We are probably all aware of the placebo effect where being told you are receiving a treatment (even if it's sugar pills) causes an improvement. I am of the opinion that plotting blood counts can be counter productive particularly if they are rising. People believe they are deteriorating and that is what happens. The brain is a very difficult organ to deal with. I am now happy to have annual blood tests (all perfect for the last 10 years) and then decide for myself how I actually feel on a day to day basis. It is not easy to reach this stage but if your husband can get here his life will be much better.

Jacques

[trswarranty in reply to TheFrog]

Hi jacques

Thanks for the reply

Yes, after reading up on CLL and SLL I was convinced he had SLL as well

But after speaking to his consultant and unintentionaly insulting her by asking if she was a CLL specialist or a blood specialist she explained that she was indeed a CLL specialist and the biopsy taken was studied and from the result that determined

Between him having CLL from SLL

I obviously don’t want him having anyMore tests in fact I’ll be very

Pleased if all was ok on watch and wait

But I just want to be sure he is having the correct information

I want to trust his specialist and I don’t want to keep dragging him from one consultant to another because he suffers enough with

His anxiety, which at the moment has calmed down

I’m glad to here

Your doing ok, all the best

Claire

[PAgrandmom]

Are they doing CT scans of the nodes to watch the sizes? I get a scan twice a year - and I get a copy of the results ASAP. All test results are available through the lab, hospital, or doctor's office. Your husband is anxious because he is feeling powerless. Have him make a book and keep all copies of blood work results - which can be put on a graph. And get copies of every scan and other test they do for him. The more research that I do when I am upset and the more papers I add to my health book, the more in control I feel. Give him something to do so that he can see his progress. The doctor does not have to like you - mine knows that I don't trust her - but she continues to treat me knowing the I am on top of what she is doing. Prayers for your husband.

[trswarranty]

Hi PAgrandmom

Thank you for

Your reply

That definately gives me food for thought

His consultant has not referred him for more scans since he was diagnosed 7 months ago

Although I do ask him to keep an eye on the size of them and if they do seem to be getting bigger I would hope another scan would be called for

I will ask for copies of blood work when we next go to see his consultant in May

Thank you and I hope things are

Going ok for you

Claire

[MsLockYourPosts Passed Volunteer in reply to trswarranty]

The thinking on scans has changed a lot over the years. Most CLL doctors don't do them, even for SLL, unless there is a definite reason to - palpable lymph nodes or the spleen increasing significantly in size, a new and rapidly growing node, or evidence that a nodes are interfering with vital organs or blood flow. It was the norm to do them yearly 15 years ago. Doctors now realize that the radiation from excessive scans can be an issue.

[sqjames6011]

I am responding to all but particularly to "Watch and wait". I too had perfect blood tests and was not diagnosed with CLL until I had a breast exam / then a ultra sound that the cancer was found and then identified with a biopsy.

I have held the cancer growth in check for 10 years by getting high doses (30-40 grams) of vit. C I.V. drip by a naturalpath. Now I only need to go in for a I.V. once every 3rd month or so. It does work, but generally the docs are not on board with this, so don't expect them to respond positively. But the vit.C also heals all cells so its a win- win deal + keeps you looking younger every year!

Susan

[trswarranty in reply to sqjames6011]

Thank you for sharing your journey Susan

I wish you all the best

My husband seem in good health considering he does get very tired but that also may have something to do with his anxiousness

The only thing low from his bloods was his vitamin D which they have now rectified with supplements which has made a huge difference

We continue to watch and wait

[MsLockYourPosts Passed Volunteer in reply to sqjames6011]

Susan - Can you provide links to studies about vit. C IVs and their effect on CLL? I'm glad that your CLL has not progressed. Many with CLL have had no progression for 10 years and more without doing anything to combat it, so without studies it is impossible to attribute a long watch and wait to anything specific (supplements, diet, whatever). "I think it's working for me." would be an appropriate statement, but "It does work." without concrete evidence is not.