Radiation as sll treatment

[Lrd38]

Hello! I saw my cll specialist for the first time today and since I have sll (p17 del) in the early stages he is referring me to a radiation oncologist for a consult. Has anyone done radiation on sll? The cancer is in my inguinal (groin) nodes on both sides and not detectable anywhere else including bone marrow. Thanks!

[AussieNeil Partner Administrator]

So good to hear that you have a CLL specialist that knows that you may respond well to radiation treatment, which might even possibly cure you, given your CLL/SLL isn't detectable in your bone marrow.

More on this possibility here:

healthunlocked.com/cllsuppo...

We have another member in your situation who has had difficulty getting this possibility accepted by her specialist and I hope that she replies to your post.

Neil

[Lrd38 in reply to AussieNeil]

Thanks! This article is helpful- there isn't much out there on this topic. I would love to hear her story.

[Jackpot]

Best of luck to you, Lrd38. I hope the radiation will stop that sll in its tracks. Be strong.

[mariemascio]

Hi Lrd38 -

Your path sounds very familiar . . . I was diagnosed with SLL this summer based on a biopsied lymph node under my arm. My blood showed a very small amount of abnormal B cells, but otherwise scans and blood normal. It's absolutely terrific that you have no cancer turning up in your blood or marrow.

Like you, I was referred for radiation but the radiation oncologist thought that the small amount of abnormal B cells in my blood showed I was too far gone for local radiation. The big question was if I was SLL Stage I (textbooks say radiation recommended) or SLL Stage IV due to the blood involvement (no radiation recommended) - my radiation oncologist thought Stage IV. My hematologist disagreed and sent my case to numerous lymphoma specialists. Eventually they got back to me with an opinion written by a Stanford lymphoma specialist who said yes, my case is Stage I, and that radiation could be done for *palliative* purposes (i.e., to alleviate pain). I don't know why she didn't recommend radiation with a curative intent. It sounds like you're in Stage I or II (the II would be due to two node areas involved, but the lack of abnormal cells in the rest of your body makes you a better candidate for radiation than me, I believe).

I've read that radiation for lymphoma requires 12-15 treatments with about 24 Gy minimum for a curative attempt (Gy = a measure of radiation dose). For palliative care the dose is much lower, about 4 Gy, in 2 doses. Fortunately, lymphomas are very delicate to radiation and so don't require much treatment in comparison with, say, breast or lung cancers.

My radiation oncologist prescribed a light treatment of two doses. This was super disappointing to me, as I wanted to try for a cure and the papers I've read seemed to support this as an option. I did the two treatments late last week and in some ways, right now, I'm glad I didn't have more since the treated area is sore and stiff and I feel a little "off". The main node has shrunk about 50% and the others seem unchanged, but I hear that it can take a little while for to clear out the radiation-damaged cells. (Interestingly, my doctor told me that the radiation doesn't kill most of the cells directly . . . rather, it rips charged atoms off the water in our tissues and these free radicals then damage the DNA in our cells and the damaged cells either kill themselves or get destroyed by the immune system).

Some things I took away from the conversations with my doctor . . . full-on (e.g., >24 Gy) radiation does a few bad things - it slightly increases risks of secondary cancers, weakens bones in the treatment area, and (importantly) makes it so that area can never be treated with radiation again. So if a secondary cancer develops in that area there are fewer tools to deal with it. My doctor also suggested that a light dose could be potentially be curative, maybe or maybe not, and wouldn't preclude more treatment in the future. So if it turns out that this slow-growing lymphoma really is confined to one area and it doesn't show up anywhere else it's possible to pursue more aggressive radiation treatment later. He thought that it's unlikely that watching and waiting a little while will miss any opportunities to whapp it if it really is localized.

I'm still disappointed in the recommendation. I've thought about paying out-of-pocket to get another opinion . . . but I feel like I'd just be chasing the treatment I think I want. And I know from past experiences I'm pretty bad at self-diagnosis =( My case has already been widely reviewed by hematologists, lymphoma specialists, and radiation oncologists . . . so now I'm trying to be at peace with their collective advice. Another thing weighing on this recommendation, maybe, is that unlike 30 years ago when treatment options were limited, we now have so many drug-based options available, potentially less toxic than radiation, and more are on the way.

Anyways, for what it's worth, that's been my summer =) It sounds like your situation is a lot more treatable with radiation . . . I very much hope you get a chance for a cure if you want to do full radiation. I'd love to hear how your experience parallels or diverges from mine. Take care. My thoughts are with you.

- Marie

PS Here are some relevant papers, oldest first:

1989 ascopubs.org/doi/pdf/10.120... Radiation treatment for Stage I and Stage II SLL can cause >10 year remissions in most patients

1996 hematologieklapper.nl/behan... Radiation treatment for early indolent lymphoma (folicular in this paper) can cause long remissions or cures

2011 ncbi.nlm.nih.gov/pmc/articl... Early SLL may be very, very indolent, may even regress, and should be watched rather than treated. This study is causing some to consider if limited-involvement SLL with tiny nodes should be treated as sort of a "Nodal MBL" that is, a little anomalous but not quite cancer and not indicating much risk. The world health organization is considering this idea.

2013 ncbi.nlm.nih.gov/pubmed/237... Low dose radiation can shrink lymph nodes

2016 ncbi.nlm.nih.gov/pmc/articl... Radiation is inappropriately "out of fashion" for NHL.

[Lrd38 in reply to mariemascio]

This is so helpful thank you for sharing your story. I am sorry that it didn't work out the way you wanted- I am sure it is hard to be invested in a potential treatment and then have to lose that hope. It sounds like you are in a good place though with your sll and will have a lot of options.

It seems like very few people have heard of this option so I am so grateful to hear your thoughts. My cll specialist (dr awan at osu) had a lot of misgivings about radiation but said I should consult about it anyway.

1. With 17p (though low at 10%) I risk killing off all the non 17p cells only and ending up with a worse sll

2. My two nodes are in the groin on either side so right near both centers of bone marrow production. and he worries about secondary cancers- he said if it was another part of my body or if I was older he would be more in favor of radiation (I am 30). He also said it would be key to see how targeted the radiation could be in avoiding problem sites- do you have any idea??

3. He is running a 3 drug trial that he feels is potentiallly as "curative" as radiation and a proponent of the progress of medical treatment to cure me in my lifetime without the risks of radiation

4. Since the two affected nodes are on different sides of the groin, he feels that even though my bmb showed no involvement, there could be traces because the cancer had to get from one side to the other somehow. He said that the chances of both sides spontaneously developing sll are too small (but then again the chances of a healthy 30 year old going to the dr with a swollen node being sll were supposed to be too small as well!!!)

I am really torn and looking forward to hearing what the radiation oncologist thinks. I know there is a risk of secondary cancer either way. I don't know how significant the 17p deletion is for radiation's effectiveness and I know with newer drugs it makes them no less effective. I just don't want to miss my window to nip my sll which could be aggressive and tricky due to 17 p deletion. In reference to the last article, he did tell me that with such low amount of sll cells (6% in both lymph node biopsies) he would think it could possibly go away on its own if it weren't for the presence of 17p deletion.

Any suggestions in what to ask a radiation oncologist or things to consider??? Any idea where I can find information about the effectiveness of radiation in sll with 17p deletion?

[mariemascio in reply to Lrd38]

Hi Lrd38 -

I'm glad my story was useful to you. I should say that I was a lot more enthusiastic about radiation before I was treated. Nearly a week later I've still got a deep ache at the treatment site, and that was only 4 Gy. Also: radiation near reproductive organs may put future progeny at risk. I had to have a pregnancy test before they would treat me, despite the fact that the treatment was under my arm! lol.

As to your point #2 above, I think the younger you are the greater your risk from radiation. Older patients often don't have the natural lifespan to develop slow-developing radiation cancers. My radiation treatment was extremely targeted. A node about 1" from the target node seems unaffected.

I would ask your radiation oncologist "if I were to get treatment, what sort of outcome are you looking for." I don't know about effectiveness on 17p deletion. I get the impression that early-presentation SLL is so rare and radiation treatment is rarer still, that there aren't many studies of how different patients respond to radiation. Those that I've found are old (like that 1989 paper, I imagine they weren't able to test for these markers yet) and retrospective (so no control/treatment groups).

My radiation oncologist said the same thing about "maybe it going away on its own." That 2011 paper I cited above suggested that very early SLL may be common and transitory, and that we're just finding it more because of more testing nowadays. A 2016 paper documenting World Health Organization revisions in how to categorize lymph node anomalies cited the 2011 paper, saying:

". . . although other confirmatory studies are necessary . . . there are a subset of cases with lymph node involvement by “SLL” that also do not seem to have a significant rate of progression. In 1 retrospective study, lymph nodes with CLL/SLL in which proliferation centers were not observed and patients in whom adenopathy was <1.5 cm based on computed tomography scans were the best candidates for tissue-based MBL" ncbi.nlm.nih.gov/pmc/articl...

I don't know, maybe this is just magical thinking! And that 2011 paper represented a very small group of patients and only followed them for two years. But to me it suggests caution with heavy treatment. Also I agree with your doctor that the risks from big radiation now should be weighed against the likelihood of better drugs that can maybe cure this thing before it catches up with us (if it ever does) . . . even though my instinct is screaming at me to do something now =(

Sending good thoughts your way.

- Marie

[Lrd38 in reply to mariemascio]

Marie you summed up all my concerns so well! Both options are so counter intuitive! How could I undergo a risky treatment with lifelong implications when I feel great and young and healthy right now!? On the other hand if there is a possible cure for a short window how could I not grab it. This is really hard.

I wonder, am I excluded from being one of those super low level, progression free sll cases because i have some 17p deletion (10%)? The 17p complicates it further. I could radiate and kill only the non 17p deleted sll cells and then end up with a very high percentage of 17p del sll. Or maybe I should be aggressive now because a disease with 17p del is going to be an aggressive sll! So many confusing factors

[Dancedunce]

Hi Lrd38

I had low level radiation to my neck in 2011 when I finally was diagnosed with SLL due to my lymphatic tissues (tonsils, voice box, back of tongue, etc) were enlarged. My oncologist at the time felt that my throat would close possibly quickly. My lymphocytes were only slightly elevated at the time. My radiation oncologist at the time did mention a possible cure but he was the only one who said that. Because my throat was already sore the radiation was very intense for me . I could not finish the 14 treatments he wanted to give me because my throat became so sore I could not eat or sleep. I had to take pain killers for two weeks more until my throat started to heal. I also lost all my hair half way up my neckline.

Since 2011 though, I have had no further treatment but my WBCs are now up to 80s. After I recovered from radiation, my local onc was still nervous about my throat and wanted to do FCR. I then went to see Dr Coutre at Stanford and he referred me to a Stanford radiation oncologist who said my throat was nothing to worry about. So in a strange way the radiation helped. It cleared my throat. I have done fine since but my SLL is now being called CLL due to my labs. I believe I only got the diagnoses of SLL because they biopsied the lymphatic tissue in the back of my tongue.

Listen to your radiation oncologist and weigh your options. You have a different situation then I did. Do you have a SLL/CLL expert near?

Take care,

Peggy

[Hoffy]

I am 17P and started with SLL but it moved to CLL after 6 month or so when my ALC went above 5000.

With 17P I would be worried about Radiation ( Just like FCR) in that it damages cells even more and can causes clonal evolutions ( the strong survive). With 17P messed up cells don't die that easy-.

I am on Imbruvica Plus Venetoclax. With Imbruvica my nodes went down nicely in 1 week mostly,

Maybe see another CLL specialist. I saw 4 my first year...

Be well,

Hoffy

[Lrd38 in reply to Hoffy]

This is exactly what I am worried about. I only have 10% 17p now. My specialist said with that small number maybe they would die off or maybe they would be the ones that stick around and then I would end up with a much higher percentage of 17p. Is radiotherapy like chemo in that it is not effective in treating 17p??

[Hoffy in reply to Lrd38]

I don't know the answer. On the CLL Society web site you can post a question to dr furman. Post it in the contact us area and they will send you an answer.

I would be curious to hear the answer since I started with sll and I am 70 percent 17p deleted.

Be well,

Hoffy

[Hoffy in reply to Lrd38]

I talked to Dr. O'Brien at a CLL Society educational Meeting today and ask her this question. She said that radiation will kill 17 p cells as well the only problem is it only kills in the area that it's radiated and not the entire body .

It should work for the nodes it radiates .

Be well

[Lrd38 in reply to Hoffy]

That's really helpful thank you! I have another for you- the flow cytometry of my bone marrow biopsy came back negative for cancer. The fish of my bmb had 10.5% del 17p. How can there be 17p in my marrow without cancer??

[Cllcanada Top Poster CURE Hero in reply to Lrd38]

Very early SLL, perhaps there isn't enough malignant B cells in the marrow... to get a differential flow result

A node biopsy might tell a different story...

FISH results look at 200 B cells not very many and your deletion count is quite low...

Something to discuss with you doctor. You could be Monoclonal B Lymphocytosis (MBL)...

~chris

[Lrd38 in reply to Cllcanada]

Thank you! My lymph node biopsies showed 6% irregular lymphocytic proliferation or something like that and were ruled inconclusive and then the fish of those showed 17p del at 10% and that is how I was diagnosed with sll. Also are you the same person as Hoffy? Haha thank you so much for taking the time to give me some insight this is all so confusing.

[Cllcanada Top Poster CURE Hero]

I had 30Gy of radiotherapy on my L2 vertabrae for Richter's DLBCL 5 years ago, and it was curative...

~chris