Hi everyone I am 46 years old and just been diagnosed wilt Cll. I will start treatment next July with chemotherapy, I am worried from the side effects am I going to lose my hair?, will I feel tired ? and will I be able to resume my life as normal after every session ? since I will have 6 sessions over six months period, can you please provide me with your feedback, thanks a lot.
Firas
Welcome... you have asked these questions before...
There is not enough information... to even begin to answer your questions. What country are you in and why are they suggesting treatment so soon.
Most patients spend years before treatment, in what is called 'watch and wait'. Patients are followed by the doctor, but treatment starts at a point where symptoms become obvious or bothersome...
Generally, CLL treatments do not cause hairloss, fatigue is common during treatment, most patients can resume normal actvities perhaps a few days to a week after each round of therapy, some can't and require 6 months away from work etc...
BUT.. we are all different... other health concerns can also play a role.
Do you know the treatments they are considering?
~chris
I know but I am worried and I need to gather more information before starting treatment. I am in Jordan and one specialist suggested treatment because he suspect that the wbc is doubling and therefore it’s better to start treatment.
You noted that your WBC was 60, so your lymphocyte count is likely in the 50's. We have members in watch and wait with lymphocyte counts of over 200. It isn't unusual for lymphocyte counts to climb rapidly (short doubling time), then stabilise, sometimes for years. For that reason, a lymphocyte doubling time of under 6 months is the least important reason for starting treatment. That's why CLL specialists don't tend to begin treatment when a patient has a fast doubling time unless there is some other stronger indicator for starting treatment. If you are feeling well and don't have any concerning symptoms, that would be why one of your doctors suggested staying in watch and wait.
Hi Firas,
You were going to seek additional professional opinions, because one of your doctors said you should stay on Watch and Wait: healthunlocked.com/cllsuppo...
Have you done this and had it confirmed that you do need to start treatment with FCR? If so, what was the reason given, because from what you have disclosed, you don't meet any of the criteria for starting treatment specified by internationally recognised CLL experts. With CLL, It is very important to start treatment at the right time, not too early and not too late. A specialist that doesn't see many patients with CLL would be unlikely to have the experience to pick this sweet spot.
IF you do end up having FCR treatment, you may experience temporary hair thinning, but not total hair loss.
Neil
Thanks I am going to see two specialist before starting treatment, but I am trying to gather information in case I started treatment.
With CLL, there's not the urgency to start treatment seen with acute leukaemia. The fact that one of your doctors recommended that you could stay in watch and wait indicates that you should be able to defer starting treatment until you have a second opinion confirming that you do need treatment.
While you are waiting for your second opinion consult, ask for a copy of your test results and compare these with the triggers for starting treatment previously shared: healthunlocked.com/cllsuppo...
I suspect that will be reassuring that there is no urgency.
Thanks dear will do so.
I was 47 when I was diagnosed and went through six months of FCR chemo. Everyone is different and perhaps I was just lucky, but I did not suffer hair loss, fatigue, nor nausea. I worked throughout that time. (I did have a nasty reaction on the first day of chemo. but was fine after that.) My fingers are crossed for you and your health!
Thanks dear, so you are in remission now, how long have you been in remission. How long was the period between each chemo session.
Thanks again and wish you long remission and hopefully full cure.
Well, my story is more complicated, like many others on his site. I had three consecutive days of chemo each month for six months back in 2011. Then I was told I was in remission. But CLL came back 2 1/2 years later. And I repeated the whole chemo process and was in remission again. Then it came back again. Now I’ve been on Ibrutinib for two years and seem to be managing things okay.
Thanks wish you the best of health and eternal remission.
My story is almost identical to yours except after my first relapse they found I had 17p deletion. I am on ibrutinab also and doing very well for 2 years now.
When I started Ibrutinib, my blood numbers were not so far from normal. The numbers then went whacko for the first four or five months and are slowly returning towards normal, with the numbers getting a bit better with every CBC. But still not normal after two years (and not yet to the better level they were at when I started taking the drug).
Hang in there - any improvement is a plus!
Salem Nour,
People your age here in the States often are still given FCR because it often results in a long remission. But the chemo part is a bit harsh and here it is seldom given to older people, like me, who are normally not as strong. That said, it is not as harsh as the chemo given for many cancers.
As you can read here and other sites, such as CLL Society, Ibrutinib and Venetoclax in combination has been shown to be very effective. So are other combinations. A high fraction of people achieve no measurable disease. These are generally easier on most people also. But Venetoclax needs to be started very slowly because it can work too fast and kill so many CLL cells that one's liver can become damaged.
A downside of Ibrutinib and Venetoclax in the US is that it is very expensive, so insurance companies may encourage a less expensive treatment like FCR first. We have a government medical system for people over 65, but even with it I can pay $10,000 a year for Ibrutinib. There is financial help for people with less than average income.
I assume Jordan has a government sponsored medical system for all ages, as does Israel. They should be able to buy these drugs at a much lower cost than we pay here, but still Jordan is not yet a fully developed rich country and, as insurance companies here, they may have a younger person like you take FCR first, even if "I" and "V" might be a better choice for you if economics were not involved.
But there are many trials being conducted for such things as "I" and "V" in combination and such trials do not cost the patient, as they are sponsored by the drug companies. If such trials are not in Jordan, there are likely to be some in Israel. There are many doctors there that speak Arabic, both Arab and Jewish doctors. Most there also speak English and your English seems quite good. People easily travel back and forth these days between Jordan and Israel.
We are both very fortunate to live in a time when CLL is a controllable disease for most people and likely curable before long. When I first had CLL my version was considered always fatal, even with FCR.
Jewish people have CLL more frequently than the general population. I do not know if it is the same for Arab people. But we are cousins and we may have similar genes, both helpful and not so helpful genes.
You have a good healthy future. But do help yourself with a good diet and exercise. Little or no meat, some fruit, but no refined sugar, avoid produce that is heavily sprayed, etc.
Humus and tehina and nuts and fish are good. Not too much fried in very hot oils, like felafel. Only a little baklavah and with real honey and nuts, not sugar. Ask your doctor if it is safe not to drink during Ramadan.
Best Wishes and be strong.
TSvi
Thanks a a lot.
I wish I could give good information about what is available in your part of the world! I'm in the US. It sounds like you have found a good resource in TSvi.
Only a little baklava! Oh, no! One of my greatest weaknesses. I never though about the honey in it. Honey should be pasteurized, especially if your immune system is compromised, as mine is. Something to ask about when you go for consults. Ask to have your IgG level tested.
Do you have copies of your lab tests? Look at your absolute lymphocyte count (not percent), your absolute neutrophils, your hemoglobin (HGB), and your platelets and what they are doing over time.
Also, over how much time have your numbers doubled. The pattern is often more important than the actual numbers. Some have had their ALC go up, but then stabilize or go back down again.
I don't know about specialists in Jordan, but know that there are some very good ones in Israel. I don't know how charges work in your part of the world. If going to Israel is realistic you might want to PM (called chat here) Brian Koffman.
If going to Israel is realistic you might want to PM (called chat here) Brian Koffman.
Dr. Koffman runs the CLL Society. He just finished CAR-T treatment in Seattle. Thankfully, he seems safely cured. He is Jewish, but lives in Los Angeles, not Israel. I do not know if he has Israeli contacts, but he does go to conferences where he may have met Israeli oncologists.
As you suggest, if Nour does want to consult someone in Israel for a 2nd opinion, I can find good suggestions for oncologists there. My Herbalist, who works very closely with my oncologist, specializes in integrative cancer medicine. He is a former Franciscan (Catholic) Monk who has a family, not Jewish. No matter; he is highly respected in Israel and was brought there a year ago for some weeks to teach about integrative oncology at Bar Ilan U and Rabin Hospitals. He would be a good resource.
I too was diagnosed with CLL at a young age. 44. And by the time I was diagnosed I was in misery with back pain from my enlarged spleen and I stayed so tired that I couldn't function. My white blood cell count was astronomical. I hear a lot about patients that are on wait and watch but sometimes that's not feasible. After my first six months of chemo I felt great and went into remission for 5 years. I did however relapse and was treated again with no success due to a 17p chromosome deletion. I am on ibrutinib now and have been for 2 years, doing great.
Brian has contacts in Israel. As the original post is not locked I'll leave it at that, as the information is about someone else. You could check his blog or send a "chat" to him here.
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