Treatment

[RK66]

Just curious. Has anyone in this blog, either now or in the past, refused all treatment? If so, what happened?

[MsLockYourPosts Passed Volunteer]

People here could be of more help,if we knew more about your situation.

[RK66]

My situation is I am a watch and wait. I'm not now, nor have I ever been, in treatment yet and don't know when I will be. My question was simply out of curiosity as to whether anyone in here has ever refused treatment and why?

Here is an interesting story of a Zap 70 patient (I am one too) who swore off chemo:

curetoday.com/publications/...

[AussieNeil Partner Administrator in reply to RK66]

Her case is different from what you initially outlined in that she initially had chemo treatment, experiencing a difficult second round and then went on to be treated with three of the four new non-chemo drugs.

Some cancer patients refuse all treatment and I thought your initial post was asking if we had any members that have elected to do that? While there may be some members that have indeed decided to do that, I suspect most that have made that decision would not be interested in joining a forum where new treatments are frequently posted about and members share their treatment experiences...

Incidentally, the article you referenced makes a reasonably good effort at covering the history of treating CLL, while primarily focusing on the newer non-chemo drugs, but is rather shallow in detail. For example the statement "Common side effects for Gazyva and Arzerra include lowered white cell count..". That's misleading due to the simplification - after all the aim of CLL drugs is to lower the white cell count, specifically the B-lymphocytes and it's not the only place where that simplification at the cost of accuracy happens in the article. What the article should have said was Common side effects for Gazyva and Arzerra include lowered neutrophil counts (called neutropenia), white cells critical in preventing infections. Incidentally, that's a common side effect of most CLL treatments, chemo and non-chemo!

Neil

[Newdawn Administrator in reply to RK66]

I think you ask a valid and relevant question RK66 and I personally think being psychologically ready and prepared for treatment is as important as the physical timing. I'm glad some members have been brave enough to admit that they simply didn't want to contemplate chemo for a number of reasons.

My concern when the time comes for the 'chemical cocktail bar' is that I'll have the team I trust who don't simply deliver me with a fait accompli. I think half the time that's the problem. Medics need to appreciate what a big deal this is and be prepared to explain properly, give options and be prepared to work in partnership.

I'd never be brave enough to deny or even delay treatment beyond recommendation but I'll be fighting to make sure I get a team around me I trust first.

Newdawn

[MsLockYourPosts Passed Volunteer in reply to RK66]

This article should have been proofed by someone who knows CLL. First of all, Zap 70 is known to not be a very reliable test when done in most centers. And it would take more than a positive Zap 70 test for a doctor to recommend treatment. Raye and Terry Evans, as the article states, are part of the Orange County CLL support group. I have attended meetings a couple of times - to far for me to be a regular - and am in contact with a few of the members. They are among the most well informed patients on the planet. No one refused treatment. Their initial treatment bought time for them to be able to take advantage of the newer non chemo options.

I agree with Neil about the descriptions of side effects of newer drugs. They very much depend on the individual. Gazyva did knock my lymphocytes down - my doctor's comment was that I was taking a drug that is designed to lower the lymphocyte count, and mine started in the normal range. My neutrophils were never out of range, but a friend on Gazyva had trouble with hers dropping.

There are a couple of people who show up in various groups from time to time who claim to have cured their CLL with supplements, getting rid of fillings and crowns, using baking soda, etc. When pinned to the wall they cannot document either a confirmed diagnosis, a BMB showing that they are cured, or both.

A well intentioned article that missed the mark on several points!

[helenolton in reply to MsLockYourPosts]

Maybe in the future someone will be able to tell us they were cured naturally. That would be such a great gift from God to us. Keeping in prayer someday I would be cured naturally to help others.

[MsLockYourPosts Passed Volunteer in reply to helenolton]

Personally, I don't believe that there is a "natural" cure, but there are a lot of quacks who are willing to try to sell you one. The new non chemo treatments are very promising, and I think that the answer will be with one of them or the right combination of drugs. It's a very exciting time in the CLL world. The biggest issue is the cost of some of the new treatments. We all need to be very aware of the efforts, from country to country, to make these drugs affordable!

[AussieNeil Partner Administrator in reply to helenolton]

I'm with Pat on this. Call me a cynic but I think that if anyone claims to have been cured naturally, it will be accompanied by them touting their 'natural cure'. They will either have been misdiagnosed or a charlatan, with a natural remission way down on the probability list and a cure even further down. Spontaneous remissions reportedly can occur but are extremely rare. This chronic cancer nearly always comes back after treatment (with some fortunate long term survivors after FCR treatment the only exception I know of). Being a chronic, slow growing cancer, the CLL cells are nearly indistinguishable from healthy B-cells and CLL cells hiding in the bone marrow are notoriously hard to kill off even with older (and even some new drugs).

IF someone is cured naturally, there's the huge difficulty in working out what actually happened to cause that and successfully translating that to others. That shouldn't stop us from hoping for that miracle for someone with CLL and hoping for an even bigger miracle that the rest of us will also be able to benefit from it, but the odds are firmly with a clinical trial delivering that.

Neil

[RK66 in reply to AussieNeil]

I tend to agree with you also Neil and I question the success stories but I did find this article interesting in light of the fact my CLL showed up after I had a botched root canal performed on me by my dentist and then redone by an endodontist shortly thereafter. I was very suspicious at the time and concerned after learning I had a bone graft with this procedure. My wife thought I was a bit paranoid and not long after, I was diagnosed with Leukemia. It may have nothing to do with it, but this article makes me question the whole thing once again. Does anyone in here have any experience with Coral Calcium?

RK66

Here is the link;

cllalternatives.com/2010/12...

[AussieNeil Partner Administrator in reply to RK66]

I've seen this referenced before, but no recent news. Does it mean you are out of luck if you don't have a root canal to remove?

Note Chaya Venkat's comments on miracle cures for CLL (in which she specifically mentions coral calcium) in her FCR-lite column of March 2010:

"Reality Check

I have a real problem with doctors and institutions that have a shoot-first-and-ask-questions-later approach to treating CLL patients. Sometimes, less may be more in controlling CLL. Lengthening the alphabet string of drugs in ever more complicated combos is not a slam dunk good choice when it comes to treating CLL.

Then there is the other end of the spectrum. There is an entire industry out there that caters to patients’ wishful thinking – that it is possible to cure full fledged, clinically diagnosed CLL by diet and lifestyle modification, magic potions, “coral” calcium and cottage cheese.

Can one cure (I mean really CURE) aggressive CLL by leading a blameless life? Will buying and using magic potions marketed by snake oil peddlers do anything more than lighten your wallet and perhaps shut your window of opportunity for getting more realistic therapy if and when you need it? I will be right upfront with my take on this issue, the answer is “no” – especially if we are talking about an aggressive form of CLL. You of course have the right to disagree. But lets keep this discussion polite, OK?

A percent of CLL patients, those fortunate enough to have the extremely indolent “smoldering” variety of CLL may never need therapy. If you are one of these lucky folks, you get a free pass. If you are so inclined, you can even tell yourself that the magic potions you take (with little or no credible clinical trial information backing their efficacy) are the reason why your CLL is under control. As always, for the rest of you not so lucky in your prognostic markers, “Buyer Beware” is a good mantra to remember."

Chaya makes a good point about how the third of us that never need treatment can confuse the question of what supposedly works to cure us of CLL...

Neil

[helenolton in reply to RK66]

I agree with you Rk66. I had been sick for 20 years with severe facial pain, bright lights were unbearable to look at , weak, always dizzy, felt like I had a virus every day always rushed to the hospital. I had seen 27 doctors and all the drs. could tell me was that I needed to take pain medicine and sent me to several pain clinics for my facial pain. I could not take any pain medicine because I would react to all medicine. I went to several dentist and they all told me it was not my teeth. I researched my symptoms at the libary and came across a book for root canal cover ups. Went to my doctor and mentioned it to him and he recommended Dr.McMahon, When I went to him nothing showed on the xrays, at this point I was in so much pain that I asked him to remove the teeth that had root canals. At first he did not want to remove them. He began removing my teeth found 3 root canal teeth that had extra canals and were sealed. One tooth was like gangerine, the second tooth had pieces of the root canal that had gone into my sinius he had to dig out. I felt 80 percent better after removal but I still have some pain on the right side of my face. I questions this everyday thinking can their be a connection to me having CLL Leukemia. I wonder if he had gotten all the pieces of the root canal particles out of my sinius. Anyone who has a root canal done should have that tooth pulled. JUST SAYING. I kept all my paperwork on everthing they did to my teeth. Thank you,

[RK66 in reply to helenolton]

Hi Helen.

Did removal make a difference on your WBC or other blood counts?

Happy Holidays,

Rk66

[helenolton in reply to RK66]

Hi Rk66,

I had the root canals removed before being diagnosed with CLL. After removal of the root canals I felt so much better. All the symptoms left except for some facial pain. 5 years later I was diagnosed with CLL. I question that maybe I have something still going on in my right side of my face due to the root canals because why would I still have some pain. A friend of my nieces friend had Leukemia recently. His white blood count continued to rise. What they found out with him was he recently had a root canal done and they had left a piece of gauze in his mouth and sealed it. They removed the gauze and he no longer has Leukemia.

They are to many stories about people have root canals and then getting CLL Leuemia. We both need to do more research on this subject.

Have a nice evening!!

[helenolton in reply to AussieNeil]

Thank you Neil. You always say the right things to comfort us with Cll Leukemia.

[Cllcanada Top Poster CURE Hero]

I have known a couple of patients who for whatever reason refused treatment or treated too late... both died within about 18 months of their doctor wanting to start their treatment... as I recall attributed causes were pneumonia and bone marrow failure.

~chris

[grizzlebear]

I refused all treatment when I was diagnosed. Decided I wasn't having any chemo ever. The consultant basically called in a junior as a witness and told me in blunt terms it was my choice 100% and it would lead to death, If I went on holiday on a plane or into a large crowd I would probably contract PCP and treatment would then be futile. He passed some paperwork over and said sign this and be on your way. He wasn't funny or rude, he even held my hand as he said it.

Changed my mind pretty quick when I think back, infact I started chemo the next morning.

I think your question maybe born out of control? Mine was totally a feeling of blind pig-headed "nobody is ordering me to do this" I was so so angry with this thing that I didn't deserve to have.

I met a bloke at chemo who refused treatment until he was good and ready and on his terms, lovely fella and we became good friends. His widow faces her first xmas alone this year because he was so far gone the chemo just wasn't enough.

Its your body and its not compulsory to have any care but you will have to live with the decision either way you go. Also refusal of "reasonable" care could affect your life insurance.

Having said that its ALWAYS your choice as to how much chemo you can stand and when to stop.

[RK66 in reply to grizzlebear]

Thanks Grizzlebear. Great comment. I'm sure I'll be taking treatment when the time comes. I was just curious if anyone refused it. Just being honest, I'm damn well not looking forward to chemo.

[Hidden]

I was one of those determined not to have chemo. It was just a psychological thing in my head, like so many people have, that chemo is toxic poison and will make the disease worse. At that time (1995) the only drugs on offer were chlorambucil and fludarabine and they didn't sound very attractive at all. So I decided to try alternative treatments like diets as I was still on w&w.

Of course no alternatives provided any cure, even though they made me generally healthier. Then gradually, around 15 years after diagnosis, I started to feel so ill that I begged my doctor to give me any drugs, no matter how toxic, just to make me feel better. By then my bone marrow was 98% impacted, which made any notion in my head that chemo is bad, quickly evaporate.

Chemo then gave me two years of good remission and now, hopefully, ibrutinib will keep me going a little longer.

So to refuse chemo does not seem to be an option with CLL. It is an illusion that one can go on and on indefinitely without treatment. One day the body will know that it is ready for something more drastic than just lots of juices and salads, and will ask for it!

Season's greetings and best wishes to all,

Sue UK

[RK66 in reply to Hidden]

Thanks for the comment Sue.

[Hidden in reply to Hidden]

I was similar to you. 91% in the bone marrow., tried juices, etc. They told me three months....which will be up in a week! Tiredness from the low red cells, an platelets at 30 told me I must do FCR chemo. I've been through 3 months of it - with miraculous results! After the first treatment lymph nodes all around me neck were no longer swollen after only a week. Now my platelets are at 278!!! Since red cells take 3 months to form, the game now is to monitor my own blood, and determine if I can stop chemo early - as I can feel the side effects more each chemo treatment. I know too much chemo is the enemy now. I get dizzy at random now. My testicles sometimes now hurt. I sometimes am not hungry now, etc. The drug Rituxan was the one that I think really helped me.

The chemo will surely get you too if you have too much!!

USA

[Hidden]

Let me add some more. I worked day after day for fortyfive years. If I was ill went to work. If I was exhausted I went to work. Over the last years the bosses commented I was losing weight. Maybe my preformance was failing. Those bosses fired me. Shorty at another job I reached a point of exhaustion I could not over come. Later that morning at the clinic I was sent to the hospital. Tests then blood transfusion then a port. Four months of FCR treatment. Am I better? Not really after two months since the last treatment. The doctors do not seem happy as they visit with me. What does that mean? My blood work up numbers seem correct. I never became infection sick during this process. No doubt over the past years I could had been on wait and watch. No doubt with out FCR treatment I would had just gotten worse. No chance of reversal. To decide not to take treatment is a interesting thought. To take treatment is like getting up morning after morning before the sun rise. Happily slugging out the unwanted tasks because you think you are a working man. I have earned the American Dream. Because of my efforts. Taking treatment show my children to stand up to do what needs to be done. Their treatment will help them more in their time than my treatment helps me. That is what I want; To show my kids to fight for life. I respect others. But. I am not jumping off the cliff because someone else jumped. I realize that others may know more than me, like Doctors. If out of the norm treatments work they would be the standard treatment, remember the snake oil business. Why do folks paint chemo as bad? It may just be a log to cross the river. I never known anyone swim it. One day a barge will be built.

[RK66 in reply to Hidden]

Thanks Madge. Great comments. I especially like the point to " show your kids to fight for life'.

[rosietwo]

Almost four years ago I was diagnosed with CLL. It showed up during routine blood work. It was a total shock since I did not exhibit any symptoms. I was in the Watch and Wait stage for a little over three years (watch and worry it's been called). I kept dragging my feet about treatment. I had this horrible memory of what it was like thirty years ago when my dad went though it.

Finally I was getting very fatigued and my "numbers" were at the stage my doctor said I should seriously consider chemo. He had been trying for a while to get me into it, but I just didn't want any part of it. He basically "scared" me into it! It was the fear of the unknown and how was I going to react to treatment that stopped me from receiving treatment earlier. Bottom line on the treatment - I'm glad I did go through it. Felt like crap during some of it. Feeling much better now.

And one word of advice if you do have treatment - realize nurses do have bad days too and don't let them push you around. They sometimes forget patients really don't want to be there. I had a couple of days when the nurses were more concerned with their comfort than mine. Just try to control your own situation or have someone there with you to speak up for you.

Rosie

[PaulaS Volunteer]

I never actually refused treatment, but I did end up delaying it quite a while, because I was hoping/waiting for trials with non-chemo agents to become available. Those trials took longer to get going, than had first been expected...

Looking back, that delay was probably not a good idea... My spleen became EXTREMELY enlarged in that time, and became very fragile by being stretched so much. Although it did shrink when I started Idelalisib, just a few days after stopping the Idela, it ballooned up again - and ruptured. That could have been fatal, if it hadn't been diagnosed and operated on quickly.

Actually after recovering from the spleen surgery, I'm now feeling a lot better, and my bloods are improving too. But I'm not sure how long that will last. It would probably have been better if I'd had treatment earlier (when the doctors first recommended it).

Paula

[RK66]

Thank you everyone for such great replies. You make me glad I asked the question. Like a lot of you, I am not looking forward to treatment when the time comes but I have no good reason to refuse it. I hope anyone else in here who might be considering refusing it reads these posts.

Merry Christmas (if you celebrate it) and happy holiday if you don't. Most of all, Happy New Year to al of you and may it be filled with hope and good cheer. Thanks for sharing your journies with us all.

Best,

RK66

[MsLockYourPosts Passed Volunteer]

RK66 - You need to remember that there are many more treatment options than there were in the past, many of them non chemo. What's important is to have a doctor who is familiar with the options ( and that means someone who is familiar with all aspects of the newer treatments and when they offer a better result than chemo, which can still be the best option for some patients. It frightens me to see doctors who know nothing about some of the newer treatments prescribing them.