Seasons greetings to all,
back to the consultant today to hear what treatment programme will be put on, kind of hoping for Brukinsa but need to take away any thought of convenience before results, feeling quite uncertain for what it will mean going forward, but trying to look forward positively 🤞we have a plan today
If you don't have TP53 aberrations and are "fit" you should only be given the choice of the 2 short duration treatments, V+O or V+I. But UK NHS doctors have found ways to circumvent the NICE approval criteria.
You are correct V & O it is, everyday is a learning day
Hello Jim-Boy, this might be a semantical observation, but Brukinsa, venetoclax, ibrutinib and obinutuzimab are not considered to be chemotherapy drugs as chemo is generally considered. They are rather targeted drugs. Its a very important distinction that could give you an advantage over true chemo treatments.
Think of chemo as dumb carpet bombs dropped from planes targeting a military base imbedded in a city. The bombs may hit the military base, but also indiscriminately hit a school and hospital too. The atom bomb dropped on Hiroshima is an extreme example. Traditional chemotherapy does not distinguish among cancer cells and good cells. It kills them all in the hope that the good ones comeback.
Targeted drugs, on the other hand, target certain cancer cells while sparing the good cells, or at least as many as can be spared. Targeted therapies are more like a smart bomb with a guidance mechanism that can fly it into the heart of the military base, as used in the example above, sparing nearby schools and hospitals.
Scientists have figured out what makes cancer cells work and how, for instance, a normal lymphocyte differs from a cancerous lymphocyte and what keeps the cancer alive. Targeted therapies aim at whatever cellular processes unique to a specific cancer cell that keep it from dying a normal death as healthy cells do and disrupt those processes in a variety of ways to allow/cause the cancer cell to die,
Traditional chemotherapy for Cll like FCR can be very effective at killing cancer cells,but at the expense of good cells. Chemotherapy can be too harsh for some unwell people and can carry much more risk of causing secondary cancers than targeted immunotherapy drugs.
I hope that distinction is helpful, we are lucky to have targeted therapies. As an aside, I get my targeted therapy drug from MD Anderson and it arrives in a bag labeled, or mislabeled, as chemotherapy.
In the broadest sense of the word “chemotherapy”, I suppose one could consider Tylenol as chemotherapy, or all other drugs made from chemical compounds. But in the traditional meaning of chemotherapy for cancers, chemotherapies are cytotoxic drugs, cytotoxic meaning toxic to cells.
Good luck with your treatment. We have excellent options these days.
Great analogy and makes a lot of sense, thanks for taking the time, best wishes
Good analogy Jeff. My oncologist’s med assistant/nurse called Imbruvica a chemo drug. I tried to explain it wasn’t. That it works by blocking an abnormal protein that signals cancer cells to multiply. She wouldn’t have any of it. It’s chemo she insisted.
Thanks Larry K. One would like to think that their oncology nurse would know the difference between chemo and targeted therapies. The distinction between the two is kind of important in making a treatment decision. Here is an article below you can give the nurse next time you see her, if you want, which should settle the debate:
Imbruvica is not a chemotherapy drug. It is a targeted treatment.
Imbruvica works by inhibiting the enzyme Bruton tyrosine kinase (BTK), which is part of a crucial signaling pathway in certain cancers, especially B-cell leukemias and lymphomas.
What is the difference between chemotherapy and targeted treatment?
Chemotherapy focuses primarily on the fact that cancer cells divide rapidly, so it kills rapidly dividing cells. Unfortunately, some of our normal cells divide rapidly too, which is why chemotherapy has multiple side effects, such as mouth problems, low blood counts, and hair loss.
Targeted treatment identifies other features of cancer cells that are different from normal cells, or are more overactive than normal cells. There are many different types of targeted treatment and each one works a bit differently, but they all interfere with the ability of the cancer cell to grow, divide, repair or communicate with other cells. Research continues to identify additional cancer features to target and work out which cancers are best treated with targeted therapies.
drugs.com/medical-answers/i....
I’ve given up trying to debate the distinction with medics on this issue to be honest. Recently a Registrar insisted to me that Ibrutinib & Venetoclax were ‘chemotherapy’ even though I outlined to him what they actually were. My Zanubrutinib is referred to as ‘oral chemo’ on the haematology day unit and I’ve come to the conclusion that it’s simply being used as a generic, coverall description for ease. More uninformed patients don’t seem to care and the truth is, I’ve found more understanding from people when I tell them I’m on oral chemo than if I try to describe targeted drugs.
Newdawn
What matters to me, is knowing that I've been privileged through the advances in CLL treatment research, to have received treatment with drugs that don't come with an increased risk of developing a secondary primary cancer. Whether or not medical personnel other than my CLL specialist (see healthunlocked.com/cllsuppo... below) appreciate the difference between chemotherapy and targeted therapy is less important.
Neil.
Yes precisely my thoughts Neil. However I do sometimes wonder if the medics I speak to on this actually understand the mechanisms at play. I’d be more reassured if they did 😉
In the final analysis, I’m just so reassured at anything that works!
Newdawn
I would think it absolutely essential for every doctor treating cll to know the difference among chemotherapy, targeted therapy and immunotherapy. Most patients do not know the difference and rely upon their doctors to know.
How can a doctor trying to decide whether to give a Cll patient fcr (chemo) or a drug like ibrutinb make an informed choice and recommendation to their patients without knowing how they are totally different classes of drugs?
Its probably not as important that oncology nurses know the distinction. I imagine there might be some doctors who treat cll who do know the difference between chemotherapy and targeted therapy, but just consider “chemotherapy’’ to be some generic description for all cancer treatments.
I think I know a lot about cll for a lay person as I have done a lot reading on it since my diagnosis. But I am pretty confident my Cll specialist knows 1000 times more than me and I am quite sure she knows the difference between an inhibitor drug and a chemotherapy drug. It would concern me greatly if my Cll doctor did not have that fundamental knowledge.
As for discussions on here and among lay people, a lot of people call their btk treatment chemotherapy and thats do big deal. The only reason I brought up the distinction with Jim-Boy in this thread is because he had entitled the thread “chemo”. For many people, the word chemotherapy brings to mind people throwing up and losing their hair during treatment. I just wanted to let Jim know, which he may have known already, that the type targeted therapy prescribed for him would not be nearly as hard as many true chemo therapies are.
That is yet another reason medical professionals treating cll should know the difference. Most people have preconceived notions about harsh chemo cancer treatments. I think it could be very important for relieving the natural anxiety people have about cancer treatment to tell them they are doing a less harsh treatment than chemo and one with less side effects.
Excellent points Cajunjeff and I've modified my reply accordingly, As you said "It would concern me greatly if my Cll doctor did not have that fundamental knowledge." and that's sadly been recognised as an issue in the USA, per this recent study that CLLerinOz posted about healthunlocked.com/cllsuppo... The relevant section of the study states, with my emphasis; "Over the past decade, treatment recommendations for patients with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL/SLL) have shifted from traditional chemoimmunotherapy to targeted therapies. Multiple new therapies are commercially available, and in many cases a lack of randomized clinical trial data makes selection of the optimal treatment for each patient challenging. Additionally, many patients continue to receive chemoimmunotherapy in the US, suggesting a gap between guidelines and real-world practice.
To the CLL Society's credit, Dr Koffman and his wife have been endeavouring to educate US oncologists about the difference through several avenues, including the organisation's Test before Treat program, where the importance of testing for FISH, IGHV and TP53 markers is highlighted. From the CLL Society Test Before Treat web page;
"Why Is It Important to Have These Three Tests Performed?
- Some common cancer treatments (such as traditional chemoimmunotherapy) may not work on certain types of CLL or SLL, so the results of these tests are very important to help guide treatment decisions."
cllsociety.org/cll-sll-pati...
Neil
And I am very grateful for the info, I was diagnosed 1 year ago and have had quite a non eventful year with it, so perhaps haven’t paid as much attention to it as it deserves, but since the beginning of October, the volume has been turned up so to speak, now having weekly blood transfusions, etc etc, so I am now on a steep learning curve with it, my haematologist used the term chemo and in my ignorance followed suit and I do still feel to a degree that “I don’t know what I don’t know still” and the input and experiences from this group are proving invaluable to help me to ask those questions and become better informed,
Thanks, but it’s immaterial what she thinks. I’ve been on Imbruvica for 9 years (mantle cell lymphoma) and it’s my oncologist who treats me, not her.
FYI: Chemo has detrimental side effects, and so does Imbruvica, some potentially deadly.
Nine years - that's great! Some of the early BTKi (ibrutinib) trial participants must be into their teen years of maintenance therapy by now.
The really important difference between chemoimmunotherapy (to give the likes of FCR and BR their full description) and inhibitor treatments, is that the former work by corrupting the process by which DNA coping is done, so that the daughter cells from division hopefully fail the copy verification check, triggering apoptosis. That DNA checking is done by TP53. which is found on 17p. That's why chemoimmunotherapy treatments don't work well, if at all, on those with 17p del or TP53 mutated CLL. It's also why there's a higher risk of secondary primary blood cancers with chemo treatments. The risks with all currently available treatments are in part why we still have watch and wait.
There is still a risk of developing secondary primary cancers with inhibitor treatments, because CLL unfortunately inhibits T cell surveillance for body cells which are undergoing changes to become cancerous. So those cells can still survive and grow into tumours.Researchers are still working on reconstituting our immune system after CLL and treatments have done their damage.
Neil
FWIW I have just been in hospital for a week with a nasty chest infection so dosed up on "bicycle pumps" worth of IV Co-amoxiclav. During that time, my Acalabrutinib was suspended. In the discharge summary, it is referred to SACT or systemic anti-cancer therapy which was to be resumed on my discharge. Although the nursing care was superb, I found being in a 6-bed bay with three patients who I wondered from time to time whether they were still alive and one other who wittered on permanently expecting me to respond intelligently I was unbelievably glad to get out of there! Perhaps "SACT" is a better way to consider the targeted therapies rather than as "Chemo".
1 finished VandO in July this year. When asked how my chemo was going, I did not attempt to explain the distinction. It was easier than going round in circles. Good luck and as Skyshark says drink plenty of water.
Yes I am so grateful for all the New & Targeted Therapy but when you don’t have a point of reference, its all Chemo to most of us. And when you have some horrible side effects, its still a nightmare!
Suppressing your immune system further & leaving you open for secondary cancers. Worsening of your digestive issues, elimination issues, cardiac issues, pulmonary issues & skin issues. I prefer no cancer at all or a forever Wait & Watch stage, anything else is still rough!
Just my 2cents
Chemo 
24th June Update
Chemo done..scans tonight
Chemo 
Nine months post chemo visit 
