Oncology appointment - due diligence

[BC-CLLguy]

Recently had my long awaited oncology appointment with an internist who also works in oncology. My CLL was discovered early, during routine bloodwork. Just curious if the doc did full due diligence, compared to other’s experiences. I do not have any symptoms atm.

He spent some time reviewing CLL and the different possible outcomes and treatments. Also explaining some of the additional cancer risks from having CLL. He felt my neck, head lymph nodes and listened to my breathing. My primary physician did a very, more detailed examination, so I am assuming he must have seen those results?!?

Next steps are wait and watch with another blood work up in three months. That would be 5 months after first bloodwork. I showed him my list of vaccinations and he said they were good.

Anything that would be a glaring miss?

[Skyshark]

If and when they find a swollen lymph node they will go looking for the others.

[LuzyCLL]

My specialist always feels my liver and spleen also.

[Keepkicking]

Hey BC'er. Albertan here. Did you receive additional vaccinations after you were diagnosed? It would be unusual for anyone to have all the recommended vaccinations pre-CLL.

Under the pinned posts on the main page, there's a post about "30 Tips" -- it lists the vaccinations recommended.

[AussieNeil Partner Administrator in reply to Keepkicking]

Excellent point thanks Keepkicking,

Actually the importance of vaccinations in reducing our risk of serious infections, now has a dedicated and maintained pinned post on recommended vaccinations: healthunlocked.com/cllsuppo...

Vaccinations don't work as well for us as they do for those who aren't immune compromised, but getting up to date with them before CLL (and treatment if needed), worsens our immunity, can reduce the risk of a severe, possibly fatal infection.

Neil

[BC-CLLguy in reply to Keepkicking]

Thank you so much. My NP suggest$d additional vaccinations. Great resource to have them on here. I will look!

[BC-CLLguy]

Good idea … are my current labs.

Current labs

[RZ8983DV]

Sound similar to what I had when I was diagnosed 15 years ago. You didn't mention the lymph nodes around the groin. Your blood counts are similar to mine on initial diagnosis. My blood counts slowly increased then stabilised so I haven't needed treatment in 15 years

[BC-CLLguy in reply to RZ8983DV]

I love hearing that… congrats. I’d like to follow in your footsteps.

[Littleabbey]

Did they do additional blood work for genetic markers, deletions that might give them an idea as to how the cancer might progress and what medications might work best for you when you need to be treated ?

[LeoPa in reply to Littleabbey]

I think that they do that only in the US. They can change during the progression of the disease so normally they do them only before treatment where I live.

[Littleabbey in reply to LeoPa]

My friend had those tests done on the first visit in Canada and now he is having treatment . He waited a month to see the specialist .

[LeoPa in reply to Littleabbey]

I think I lost the thread. Your friend is not Canadian but he visited Canada and had these tests done? Did he do it privately and paid cash? Or did I get it wrong and you meant the doctor's appointment (visit)?

[Littleabbey in reply to LeoPa]

Oh, I'm sorry. He is Canadian and has those tests done at his first visit with the hematologist and nothing paid out of pocket .

[LeoPa in reply to Littleabbey]

Thanks! All clear now. Kudos to Canada for doing those tests upon diagnosis.

[Imua in reply to LeoPa]

I was told (for both Alberta and Ontario)that they generally do not do the additonal testing unless you are ready for treatment- which if your bloodwork indicated treatment was required right away they would do it. You are lucky to get a doctor who does the extra blood work when you are still on watch and wait! The main point is at a minimum TEST before TREAT!

[JigFettler Volunteer]

At some point you will need a CT scan. Neck to groin. My biggest lymphnode was abdominal. Not sure if you can be properly "staged" without.

Your L Count is low, looks early days.

Jig

[Phil4-13]

BC-CLLguy, all the same with my oncologist visits. I wish you a continued easy going watch and wait. Check with this group about anything. There are no silly questions here. 🙂 Sandra

[LeoPa]

Is he a hemato-oncologist?

[Bud129]

if the internist primary practice is not in oncology, you may want to go to one.

[PusscatsGoodies]

Sound like you have a good doctor there and is taking a keen interest.

I was diagnosed 1 year ago and haven't even seen mine yet, spoke to him twice though, my bloods are taken every 6 months my levels are low so not too worried at the minute, not had any vaccinations apart from the pneumonia one which I had to fight for from my GPs.

So am thinking they dont think I need them as yet.

Donna

[Imua]

Unfortunately there are only a few CLL specialists in Canada and from my recent experience moving to Ontario (from Alberta) they don't seem to be accepting new patients. So you need to become your own advocate. Addiitonally it seems random whether you are referred to an oncologist or a hematologist. As mentioned, in Canada doctors do not routinely do additional blood work checking for genetic markers, deletions, etc. . I went to the University of Rochester to have mine done at my own expense. If you haven't done so already, check out CLLsociety.org. Although it is based out of the US, they provide excellent information.

[BC-CLLguy in reply to Imua]

Thank you so much. It’s a confusing process for sure to get into a proper CLL specialist. I appreciate the info.

[bennevisplace]

Three things you can do to mitigate the heightened risk of secondary cancers that all CLL patients face:

- Maintain a healthy lifestyle

- Regularly examine your skin with the help of your partner, and immediately report any changes to your doctor

- Join the colon cancer screening programme and do the tests

[BC-CLLguy in reply to bennevisplace]

Thank you - very good advice

[AnneHill]

I think you are very brave. I know its quite a shock when we are told we have cll. I am 66 and was diagnosed when I was 43. Treatments these days are amazing.I didnt need treatment for 9 years and it was chemo. There was a new drug called Rituximab included. It was a game changer and improved things completely. I had remission but needed treatment 8 years later with a new drug called Ibrutinib.

The reason I am saying all this is because treatments are changing really quickly. The Ibrutinib is a tablet that is taken every day. There are newer drugs but I dont need them yet.

Watch and wait is a time when you can leave it to your haematologist and doctor to monitor you.

I have realised that there isnt anything you can do. When the consultant thinks you need treatment it will be even better than now.

Make sure you keep your distance from folk with bugs.

Try to enjoy life. You can get advice if you need it. Scans can be done when your numbers are higher. Treatment is done when your numbers are high and your have enlarged lymph nodes.

That might be years away. Take care, Anne uk

[BC-CLLguy in reply to AnneHill]

Thanks Anne! 🙏