A little confused........

[Hamish_McTavish_III]

Last week I had my first 6 monthly follow up telephone consultation following my diagnosis. My most recent bloodwork was excellent I was told and showed nothing of concern. This was a huge relief and I celebrated by raising both arms in the air until I realised that was not a good move due to my AS. I grabbed my right arm to help lower it slowly and as I did so I felt a lump at the back of my armpit. Next day I telephoned my GP for a quick checkup just to ease my mind. My GP was unsure what the lump was and then proceeded to find another in my neck that he felt was not quite right. Both are pea sized.

My confusion arises from the fact that my bloods say all is well yet two small lumps near/on my lymph nodes appear to indicate otherwise. The GP confirmed that they do not appear tone fatty lumps and he has written to my consultant to ask how to progress. Anyone any ideas what could be going on, please?

[sweatbee]

Hamish,

I have SLL, the lumpy version of CLL, and currently my bloodwork is absolutely normal. I've been on W&W for 2.5 years and am still feeling good.

I have small lumps on both sides of my neck that can be felt plus many more throughout my body that can only be detected by CAT scans. I don't seem to have armpit lumps, but I do have a couple of pea sized ones in the groin area.

You are probably going to need additional tests to determine what is going on. These lumps may just be a "normal" side effect of your CLL.

Blessings,

Hal

[Hamish_McTavish_III in reply to sweatbee]

Thank you Sweetbee. My feelings went from hero to zero in milliseconds but your reply makes me feel so much better again. I just couldn't get my head around 'wonderful' bloods but lumps as well. Thank you for restoring my balance.

Hamish

[MistyMountainHop]

Hello Hamish,

I have 2 pea sizes 'lumps' below my ears.... 2 under my lower jaw...... They have been there before l was diagnosed (in 2014)......They are still the same size... I am still on W&W (without any treatment!) .... My latest blood tests, a month ago, are good...

[Hamish_McTavish_III in reply to MistyMountainHop]

Thank you MistyMountainHop. It is good to know that your lumps have not grown after all that time and that your bloods are also good. I didn't expect to find lumps but from the answers from the lovely people on here it seems good bloods and lumps can go together.Take care.

[lankisterguy Volunteer]

Hi Hamish_McTavish_III,-

In my past 4 progressions to treatment, my lymph nodes behaved differently each time, and whether my internal abdominal nodes swelled or my external/surface nodes around my neck and collar bone got larger, had very little to do with my blood test results.

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Also whenever I got a vaccination for flu, shingles or COVID-19 my external lymph nodes near the injection site swell up for a few days.

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I also have a few Lipomas webmd.com/skin-problems-and... which can grow slowly until I happen to feel them by accident.

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Until your nodes enlarge over 5 to 10 cm the CLL experts won't be concerned unless they cause a problem for blood flow or interfere with a major organ.

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Len

[Hamish_McTavish_III in reply to lankisterguy]

That is very interesting thank you Len. I self-inject each month for another condition. I shall watch what happens, if anything, to my lump each time.

To my knowledge I have only one Lipoma and that is growing slowly but surely.

Regards.

[Pageboy]

I had lumps either side of my neck before my diagnosis and while my WBC was hovering at the higher end of normal. The one where the doctor says ‘you’ve probably just had a virus but let’s see.’ I remember being given a massage as a birthday treat and the masseur trying massage the ‘knots’ out! I think the CLL presents differently in all of us or perhaps sometimes we can ignore the lumps or not find them until after diagnosis when we go looking. If they are part of your CLL then there is a very good chance they will not mean treatment for a long time as they sound very small.

[Hamish_McTavish_III in reply to Pageboy]

Thanks Pageboy. The lump under my arm could have been there for ages in fairness as I had not felt it, not looked for it, before. I still can't feel the one in my neck that the GP told me he felt! With a bit of luck they will be no more than what seems a 'normal' part of CLL and remain small for many years.

Best wishes.

[Ghounds]

My "little bumps" were partly to blame for my diagnosis 4 years ago. I happened to mention them to my GP at the end of a routine telephone call about another issue. Try not to worry. Easier said than done I know!

How is Hamish doing? I'm happy to report Mr B is still here and doing better than expected. He's lively, interested in life and eating for England probably due to his daily Prednisolone. Still comfortable on minimal pain relief. He may just make his six year adoptaversary yet...

[Hamish_McTavish_III in reply to Ghounds]

Hi Ghounds, The replies I have received from the great folk in this group have eased my concerns somewhat and I am feeling much more relaxed about it all again now.

It is wonderful to hear Mr B is doing so well and loving life. That is so important for them and for for our peace of mind that they are not in pain.

I am pleased to be able to say that Hamish is also doing well at the moment. He is now on a brand new injection for his arthritis and he is like a young pup again until it starts to wear off. The growth under his tongue is being monitored and a treatment plan will be decided upon once the growth rate is determined. All being well he will also be guest of honour at his playmate Sophie's 10 Birthday on the 9th Sept'.

[Ghounds]

A brief update: We saw the vet today and she is happy to not see Mr B for a month unless anything changes. We can try reducing his current pain relief of two co codamol daily as she doesn't think he needs that much. He has a little fan club down there who are almost as happy as I am to see him doing so well and defying expectations which were that he wouldn't see the end of August. So his adoptaversary is looking hopeful after all!

He sends a restrained Greyhound wag to Hamish and Sophie.🐕

[Hamish_McTavish_III in reply to Ghounds]

Wonderful news! He obviously has the gift of sharing his love around. What date is his adoptaversary this month?

Hamish & Sophie send a typical OTT Flatcoat Lick, helicopter tail wag with an excited wobble.

[Ghounds in reply to Hamish_McTavish_III]

It's the 19th. Thank you! and thanks to Hamish and Sophie for the greetings 😊. Mr B does not do licking but the occasional helicopter wag has been observed 😂. His big thing is spinning, the only one of my Hounds to have done so.

[Hamish_McTavish_III in reply to Ghounds]

Hamish & Sophie are very happy to send huge tail wags, licks and excited woofs to Mr B on his Adoptaversary. We all hope he has a fabulous day with you and that special memories are made. 💜

[Ghounds in reply to Hamish_McTavish_III]

Thank you so much to you all! I'm happy to say Mr B is still here despite a worrying start to the week with a raised temperature and a respiration rate five times normal. I started him on his emergency antibiotic and the vet prescribed a drug to help his airway. So that's four lots to take now!

We're having a lovely day thank you, had a stroll down to the bottom field for sniffing/spinning/a short couple of canters and the rare treat of plain cake has been wolfed.

Later will be toast and another small piece of cake.

He was also feeling well enough to stay on our bed overnight rather than getting too hot and going to lie on the floor so that was a wonderful beginning to a special day.

I'm so touched you remembered so thank you again.

[Hamish_McTavish_III]

That is wonderful to hear that you have all had a good day. Cake, sniffing, spinning, cantering and yet more cake and then toast has got to be a great adoptaversary ! So pleased to hear Mr B has made it for him and also for You. He was able to enjoy it because of your care and love for him, a special person indeed.Funny regarding the bed. Sophie claims the kitchen floor (wood laminate) while Hamish claims the wet room (tiles)to cool down on.

Anyway, so pleased you have had a good day together and hopefully many more to come.