What about SLL.in Canada.....im in Ontario

[Stelladoro]

Im a 71year old recently diagnosed with SLL im worried..never thought id have cancer!!I I already have MS....enough already!!! Having a ct scan next week...but no treatment

[cajunjeff]

Welcome to the forum Stella. Sorry about your dual diagnosis. If you do not know much about cll or sll (versions of the same cancer), you should find this forum very helpful.

Cll/sll has similarities and differences from person to person, so when we discuss it we are not always comparing apples to apples. In general, and what I think would be helpful for you to know now, is that compared to other cancers cll/sll can be very slow growing. Many people go years and years before needing treatment, some never need treatment, it depends on whether one has a more or less aggressive type cll/sll.

For those of us that do need treatment, there are a multitude of options. The trend is toward oral immunotherapy drugs and away from chemo. There is real hope some combination of these immunotherapy drugs will result in cures for some of us. At a minimum these drugs have proven to provide long term disease control with tolerable side effects for many, if not most, people.

Everyone on here as gone through the shock of a cancer diagnosis. There is a learning curve with cll/sll, its a bit of a counter intuitive cancer in that catching it early is not all that important since there is no evidence that early treatment changes the outcome. We wait to treat until we need to. Be wary of cll/sll survival data, they are all outdated. Many people diagnosed in this era of novel drugs have an excellent chance to live a normal or near normal life expectancy with cll/sll.

The best and most consistent advice you will get on here is to seek out a cll/sll specialist. Well meaning and very qualified general oncologists are sometimes not up to date on the rapidly changing treatment options for cll/sll.

[PlanetaryKim in reply to cajunjeff]

Perhaps more accurate to say the trend is toward oral signal inhibitors (ibtuinib, acalabrutinib, venetoclax, etc.), sometimes used in conjunction with oral immunotherapy (rituximab, obinutuzumab, etc).

As per this article, for example: hematologyandoncology.net/a...

[cajunjeff in reply to PlanetaryKim]

True. I was trying to give general information in layman terms and not overload a new member with technical differences among oral options, but rather just to reassure a new member there are chemo alternatives. But yes, ibrutinib is an inhibitor.

[ivy39 in reply to PlanetaryKim]

I think both Rituximab and Obinutuzumab are given intravenously or, in the case of Rituximab also by regular injection but neither is given orally (yet).

[Stelladoro in reply to cajunjeff]

Thank you so much for your response...i do have a hematologist/oncologist....only seen him once so far....am having a ctscan next week....thanks again

[cajunjeff in reply to Stelladoro]

That’s great Stella. Should any doctor you are seeing suggest treatment for you now, it’s very important to get a second opinion from a Cll specialist if possible.

A hematologist or oncologist who sees a number of Cll patients in a practice that includes other cancers might not be what many on here consider to be a Cll specialist. Most true Cll specialists see most only Cll patients and are more often found at major cancer centers in big cities.

I had a highly qualified oncologist who wanted to treat me right away with chemotherapy. I saw two specialists after who both disagreed. As it turns out I was able to delay treatment a few years and avoid chemotherapy when I did start.

The doctor you are seeing might well be a true specialist. Even so, the decision when to first treat and how to first treat is so critical to your outcome it’s almost always wise to seek a second opinion before treating.

Welcome again and I hope your appointment goes well. Jeff

[Mamouchi in reply to Stelladoro]

Hi... are you in Canada? I have never had a CT Scan and my non visible lymphnodes keep growing as per my last ultrasound. I would like to ask my oncologist for one, but he is so resistant to my requests

[Stelladoro in reply to cajunjeff]

Thank you

[Stelladoro in reply to cajunjeff]

Thank you so much

[1ofakind]

Sorry you are dealing with a new diagnosis but after the initial shock you will be able to resume your regular life.... The whole diagnostic procedure is concerning and the thought of cancer is tough to think about but when they say no treatment, it means exactly that .... This is a different kind of cancer ... one which warrants watching and monitoring but not one that requires instant treatment as a rule . Use this site for information and support... The people here care and are ready to help and support us all

It’s a great place to vent and also to help others which is therapeutic in itself ...

Understand how you feel having yet Another medical condition with which to cope ,but You will do well.

Wishing you an easy adjustment ,a long Watch and wait period and most importantly Good Health to Enjoy the nonmedical parts of your day!

Be well!!

[Stelladoro in reply to 1ofakind]

Thank you so much

[DisneyMom]

The new diagnosis can definitely be a shocker. At 39, I didn't think I would hear that I have cancer. But this forum is wonderfully supportive!

I'm also in Ontario, whereabouts are you?

Carol 🇨🇦

[Stelladoro in reply to DisneyMom]

Im in Burlington

[DisneyMom in reply to Stelladoro]

Juravinski in Hamilton is amazing, my brother in law is being treated there now for colorectal cancer. Also Princess Margaret in Toronto.

Im in Durham, but was born and raised in Niagara.

[Stelladoro in reply to DisneyMom]

Raised in Niagara also....what high school did you go to

[DisneyMom in reply to Stelladoro]

2 years at A.N. Myer, 2 years at Stamford Collegiate. You?

[Stelladoro in reply to DisneyMom]

Omy goodness 4years at scvi

[DisneyMom in reply to Stelladoro]

Crazy small world!!! What year did you graduate?

[Stelladoro in reply to DisneyMom]

Probably before you 66 then 3 years in Hamilton..st joes nsg

[DisneyMom in reply to Stelladoro]

A little before me. I graduated in '97. Lol

[Stelladoro in reply to DisneyMom]

Just a little!! Lol

Ill let you know the results of my ctscan my appt with oncologist is on wed.very intetested to see how far these nodes have gone!!Have a great long weekend!😍

[Stelladoro in reply to DisneyMom]

I'm in Halton area near Toronto you ?

[DisneyMom in reply to Stelladoro]

Oshawa now. 😊

[MsLockYourPosts Passed Volunteer]

I don't know distances in Ontario, but there are some well known specialists in Hamilton and Toronto. It sounds like your current hematologist is being thorough about establishing a baseline. Once all of your test results are back you will have a better picture of where you are with your SLL. Keep asking questions as you get the pieces in place.

[Marie-54]

I too have SLL and have also received treatment for it.

First - This disease is normally a very slow mover, and you may go years before ever needing any treatment. Treatment only occurs if you are truly suffering from the B symptoms - Night Sweats, Fevers, Unexplained weight loss, or if the lymph nodes have gotten to such a size that they are impacting the funtion of other organs or are too uncomfortable. You might never reach that point.

Second - Treatment, when it did occur had an immediate impact on the size of my lymph nodes. They are still back to relatively normal size and I am now 1.5 years past last treatment.

Third - The CT scan will give you a great baseline to be used as a measure for both before and after treatment. For we SLL types, this is an important test as the diseased cells hide out in the lymph nodes and other organs instead of roaming freely around the bloodstream like those in CLL types.

You will be absorbing a lot of information in the next few months. We are here to help you understand what it all means. There are incredible resources here who walk us through it all in ways we can understand. Just ask your questions and we will get back to you.

May your watch and wait period be a long and uneventful one.

[Stelladoro in reply to Marie-54]

Thanks Marie

[studebaker]

Hi Stella, I have been diagnosed with CLL/SLL about a year and a half ago.

I was told I need treatment immediately and unfortunately, still in shock and not getting educated by this forum yet ( I found this amazing site later) I agreed.

My point is do not get rushed into treatment and take your time to understand all of the options you have.

I wish you long successful journey we are on.

I am also in Ontario in Oakville and there is a CLL/SLL group organizing in Toronto this Fall if you are interested.

Dana

[Stelladoro in reply to studebaker]

Seems like we are all in the Halton area

[SenateurDupont]

Hi Stella,

Guillaume here, from Montréal. Sorry for the shock you've had. If you want more informations, you can get some here or by CLL Canada at :1-833-222-4884. They will have plenty of ressources and informations for you. Well, they've been helpful for me.

Regards.