Return of symptoms after starting on I & V four months ago

[chillsome]

Hi, I was diagnosed with SLL/CLL in Jan 2018. Enlarged lymph nodes just about everywhere including a big one in the mesentery (back of abdomen) that could not be biopsied due to inaccessibility. This was getting larger and causing increasing stomach pain. As I understand it, my bloods were never drastically bad but lymphocytes were on the increase. I think due mainly to the size of the nodes in the mesentery and the pain being caused by them, I was enrolled in the Flair trial (I & V) as my first line of treatment in September. Reached full dose of V before Christmas and all okay with main problem being stomach-related issues (mainly intermittent, not severe diarrhoea) and neuropathy which is painful and makes sleeping very difficult. The visible lymph nodes disappeared very quickly and bloods good. The largest one in the mesentery was said to have reduced but not gone away. In the last couple of weeks, the stomach pain has started again in exactly the same place as before and is increasing. I cannot feel other lymph nodes back up although maybe a little in right groin (the stomach pain is on the right hand side). Can't think of a logical reason why this would be happening while I have been on uninterrupted treatment. Has anyone's CLL been worst in this part of the body and has anyone experienced a return of symptoms at this stage of treatment? I am seeing my consultant on Tuesday and maybe he will recommend another scan although I don't think I am due one under the trial for another 3 months or so.

[lankisterguy Volunteer]

Hi chillsome,

-

One of the important facts I learned, is that CLL causes problems with our immune system, so we often get infections from bacteria, viruses or fungus that is separate from our CLL. Finding a doctor that is willing to investigate beyond the obvious is a challenge. If you have a good General Practicioner they may be able to parse out a cause. Eventually it may requre a specialist that deals with unusual infectious diseases like HIV Aids or Multiple Sclerosis to separate out these causes from the CLL.

-

Len

[chillsome in reply to lankisterguy]

Many thanks

[809123 in reply to lankisterguy]

My consultant is always clear. CLL is one condition, we can still get infections, and other conditions as we age. Too many doctors I speak immediately say “oh you have CLL, and you need to attend A&E” It drives me mad. Even small skin infections from insect bites that can be eliminated with oral Antibiotics, most doctors turn the other way and send me to the hospital.

[chillsome in reply to 809123]

True! It is too easy to blame everything on the CLL or effects of the treatment. Thank you.

[Justasheet1]

Chillsome,

Not to alarm you but you need to make them examine that node again. If they can’t biopsy it, perhaps a PET scan?

How is your LDH been? Any fevers or night sweats?

Jeff

[chillsome in reply to Justasheet1]

Hi Jeff Thanks for your reply. I am afraid I am woefully ignorant so no idea what LDH is but will find out. Yes some night sweats recently (worse than I had before treatment) but not every night. Thanks again.

[Justasheet1 in reply to chillsome]

Chillsome,

LDH is a blood test which can be an indicator of activity in the CLL. If the test is super high, your doctor needs to investigate.

When I was on a clinical trial, they wanted to know every time I sneezed. Why are they not aggressively investigating this for you?

Jeff

[Newdawn Administrator in reply to Justasheet1]

I’ve never seen mine reported to be honest Jeff since the start of my trial. Doesn’t seem to be an automatic test everywhere.

Newdawn

[PlanetaryKim in reply to Newdawn]

My LDH is being checked before I stat venetoclax next week. And I have had it checked other times when I had very active CLL progression. The limitation though with LDH is that it is a marker of severe inflammation from any number of possible diseases - not just CLL.

[Newdawn Administrator in reply to PlanetaryKim]

Yes it is Kim and prior to the start of my treatment, mine was very high. That’s not so unusual and mine has always registered higher anyway due to my systemic inflammation from other conditions.

Newdawn

[chillsome in reply to Justasheet1]

Hi Jeff Yes I see them and have blood tests monthly. Next time is this coming Tues but I just wanted to get some knowledge before going. When I last went, the pain in my abdomen had just returned but only very slightly. I am sure they will offer a scan if I don't brush aside the symptoms as is my tendency. Thanks for your advice. Fiona

[Newdawn Administrator]

Hi chillsome,

I’m also on the I&V trial of Flair and have been on it 11 months. I can’t help with the issues you’re describing but be assured your Consultant’s primary consideration is your clinical need not the requirements of the trial so he’ll order any scans or tests you need regardless of scheduled trial frequency.

I hope you get answers. I’ve had stomach pain and severe arthralgia causing neuropathy but it’s not due to node enlargement so there may be other reasons. However, it’s important that a further scan is done to see what’s happening to any residual or new nodes.

Best wishes and let us know how you go.

Newdawn

[chillsome in reply to Newdawn]

Thank you New Dawn. On basis of your and others ' advice, I think I will go for the scan if they think it is justified. At least it will put my mind at rest. Sure it is nothing to worry about as not logical for that node to be growing again when the rest don't seem to be. Thanks again Fiona

[1962jns]

I was just recently diagnosed with CLL/SLL. Going for second opinion soon. Does the SLL diagnosis mean it is more in the lymph nodes then the blood? Is it treated the same way? I don’t think my lymph nodes are enlarged at this time. It was discovered after a lumpectomy with in the nodes that were removed at that time. Yes breast cancer and now this.

[sllincolorado in reply to 1962jns]

So glad you are going for a second opinion. Very smart thing to do. I have SLL and my understanding is it presents more in lymph nodes. It is treated in the same way unless you have something atypical. Bummer about the double diagnosis. If your lymph nodes are not enlarged you may not need treat for many years if ever - your markers should provide some general guidelines. Also if you had chemo for your breast cancer that may have knocked down some of the SLL in your nodes . I would want to understand that from the CLL specialist.

[chillsome in reply to 1962jns]

Hi possibly best not to rely on my limited knowledge but yes I think SLL is more in the lymph nodes than the blood but they are both treated the same. However I don't understand it being SLL without enlarged nodes. As I say I am no expert as I have just blindly followed advice from those medics I trust to know more than I do. Good luck. Fiona

[1962jns]

Thank you so much for your reply. I did not need chemo. My margins and nodes were clear for the breast cancer but not the CLL/SLL. This was a shock to all my breast cancer doctors. My absolute lymphocytes have been high for years along with low ferritin and debilitating fatigue which was all overlooked by the GP I was seeing. I need to do another iron panel and if ferritin still low I can get an iron infusion. Second opinion at end of month scheduled at Winship at Emory as I live in Atlanta.