What next?

[Guest guest]

Timely topic for me, .

I did start fludarabine plus rituxan and my onc, to excellent effect: 5 plus

years remission. But now my MD is hinting about penta-something (can't

remember the name) with chlorambucil and rituxan for when I need treatment,

which may be very soon. Studies on the penta-whatever seem scant...

Best,

Marietta

Age 50, Dx 2002 Stg 4, Rituxan+Fludarabine

[Guest guest]

Marietta,

Perhaps that drug is Pentostatin which is generic for Nipent. My

first onco wanted me to do this drug with Cytoxan and Rituxan. But I

didn't. I am in W & W.

Judy

>

> Timely topic for me, .

> I did start fludarabine plus rituxan and my onc, to excellent

effect: 5 plus

> years remission. But now my MD is hinting about penta-something

(can't

> remember the name) with chlorambucil and rituxan for when I need

treatment,

> which may be very soon. Studies on the penta-whatever seem scant...

>

> Best,

>

> Marietta

>

> Age 50, Dx 2002 Stg 4, Rituxan+Fludarabine

>

[Guest guest]

,

This is exactly the question I have, " what's next " . I completed FCR3 at MD in April 2005. Now they tell me I've started to relapse, what are my alternatives now? I feel fine, so far no enlarged nodes or spleen. What are options availiable? All CBC is in normal ranges except for low plateletes which are 89.

Thanks

age 63

On 9/25/07, jb50192@... <jb50192@...> wrote:

I'm wondering if there are folks out there who have had Fludara + other stuff, Chlorambucil + other stuff, and are wondering what to do next?

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[Guest guest]

Hello Colin,

My 74 tear old mother has had 2 rounds og 40 mg of Chlorambucil. I

think the dose 1) is higher if you are a man maybe base on weight, 2)

I think age might have something to do with it, the younger folks in

their 50's can take higher doses. We got back from doctor today WBC

is down Red counts still low side of normal, so the doc said we wait

a week, for the Red counts to recover, then start Round 3, and I

think she may lower/ raise dose.

>

> Hi ,

>

> Yes, I am in the " what next? " phase after 5+ years on Chlorambucil

and

> Pred. That treatment has given me an excellent quality of life but

my lymph

> nodes have now come up again and my platelets have dropped to the

80-100

> range. Incidentally, my dosage of Chlor has been 20mg/day for 5

days, every

> 5 weeks. That is equivalent to 80mg/month, considered here to be a

> moderate dose, whereas a trial in UK was giving 140mg/month,

presumably to

> patients of about 2 sq.m. It seems that here in Europe, the

140mg/month is

> now generally considered the most appropriate dose of Chlor to get

the best

> results. I have been surprised, therefore, to see in this group and

the

> ACOR list mentions of only 40 mg/month

>

> To revert to " What next?, we saw Terry Hamblin in UK a couple of

weeks agao

> and he came up with a number of options without specifically

recommending

> any of them, except for a nod in the direction of F+C for a couple

of

> months to see what would happen. My DiSC assay, now

called " Personalized

> Tumour Response Test " , done in Bath in August, shows me not

particualry

> sensitive to either F or C, but Terry doesn't have a very high

regard for

> the reliability of that test. We have decided with the Centro

Mandelli

> people in Rome, who look after me, to give the FC a shot, but at a

dose

> lower than the usual and to add Dexamethosone to help bring my

nodes down.

>

> I am concerned about two things with this protocol and I am going

to revert

> to the Centro Mandelli about them. Firstly, I would like to have a

FISH

> test done before beginning F to see whether my P53 is still all

right;

> secondly, the dexamethosone at the same time as the F will be very

hard on

> my immune system, whereas if I had it some days before beginning

the F, it

> might start to clear out my nodes and thereby give the F a better

chance.

>

> Bestto all,

>

> Colin Fraser, Italy

> Dx 1998, Chlor + Pred since June 2002

>

[Guest guest]

Seeing Dr. Furman and Dr. is exactly what I would have recommended. I will be thinking of you and sending you good vibes until you get back into good shape again. (In the interim, how about some down time away from all of the geniuses in this group?)

Warm thoughts,

Bonnie

What next?

I thought that for once I would post about myself and see what you geniuses can come up with.

DX in 1997, FR in 1999-2000

A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did a number on red counts.

Now being plagued with low HGB (flirting with the 10 mark), low PLTs (flirting with the 100 mark), and pretty intense fatigue and very low energy.

Any cool ideas? Am seeing Drs. Furman and in the next weeks.

Thanks,

[Guest guest]

,

I'm no expert, but I do a lot of research. Maybe if you gave me more info I could say something sensible.

What is your abs lymph count? When were you dxd and how has your cll progressed? What is your hemocrit and plt level? Have you had any treatment (for cll, not babesiosis) and if yes, did you have a complete remission? How long was it?

Andy

BTW, I had my second rituxan infusion today and all went smoothly. Tomorrow I'll have my second cytoxan infusion. I'vel been feeling well since my last blood transfusion. My hg has gone up to 10.5, the highest I've had since my AIHA hit.

What next?

I thought that for once I would post about myself and see what you geniuses can come up with.

DX in 1997, FR in 1999-2000

A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did a number on red counts.

Now being plagued with low HGB (flirting with the 10 mark), low PLTs (flirting with the 100 mark), and pretty intense fatigue and very low energy.

Any cool ideas? Am seeing Drs. Furman and in the next weeks.

Thanks,

[Guest guest]

,

I reread your email and noticed that half the information I'm asking for is already there.

I'm especially interested in progression, both before and after your FR.

Andy

What next?

I thought that for once I would post about myself and see what you geniuses can come up with.

DX in 1997, FR in 1999-2000

A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did a number on red counts.

Now being plagued with low HGB (flirting with the 10 mark), low PLTs (flirting with the 100 mark), and pretty intense fatigue and very low energy.

Any cool ideas? Am seeing Drs. Furman and in the next weeks.

Thanks,

[Guest guest]

Have your B-12 counts done.

For years docs thoughts my anemia and fatigue was CLL related.

The B12 counts proved they were wrong.

Now a simple shot every two months and my fatigue has reduced and my anemia

nearly gone...

Take away...don't assume everything is CLL related!

~chris

>

> I thought that for once I would post about myself and see what you geniuses

> can come up with.

>

> DX in 1997, FR in 1999-2000

>

> A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did

> a number on red counts.

>

> Now being plagued with low HGB (flirting with the 10 mark), low PLTs

> (flirting with the 100 mark), and pretty intense fatigue and very low energy.

>

> Any cool ideas? Am seeing Drs. Furman and in the next weeks.

>

> Thanks,

>

[Guest guest]

This comes to show how each person is different. That's why it's so difficult to treat CLL.

I've just had my B12 checked and it's in normal range. So is my serum iron.

On the other hand, my vitamin D is low even though I've been taking 2000 IU daily. My PCP told me to take 4000 IU which I started doing.

Andy

Re: What next?

Have your B-12 counts done.For years docs thoughts my anemia and fatigue was CLL related. The B12 counts proved they were wrong.Now a simple shot every two months and my fatigue has reduced and my anemia nearly gone...Take away...don't assume everything is CLL related!~chris>> I thought that for once I would post about myself and see what you geniuses > can come up with.> > DX in 1997, FR in 1999-2000 > > A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did > a number on red counts.> > Now being plagued with low HGB (flirting with the 10 mark), low PLTs > (flirting with the 100 mark), and pretty intense fatigue and very low energy.> > Any cool ideas? Am seeing Drs. Furman and in the next weeks.> > Thanks, >

[Guest guest]

- good point, thanks, actually b12 was below limits and am taking 1000/day now - have to re-check levels - docs thought tabs were better than shots, too short lived -

In a message dated 8/11/2010 8:18:33 P.M. Eastern Daylight Time, cllcanada@... writes:

Have your B-12 counts done.For years docs thoughts my anemia and fatigue was CLL related. The B12 counts proved they were wrong.Now a simple shot every two months and my fatigue has reduced and my anemia nearly gone...Take away...don't assume everything is CLL related!~chris>> I thought that for once I would post about myself and see what you geniuses > can come up with.> > DX in 1997, FR in 1999-2000 > > A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did > a number on red counts.> > Now being plagued with low HGB (flirting with the 10 mark), low PLTs > (flirting with the 100 mark), and pretty intense fatigue and very low energy.> > Any cool ideas? Am seeing Drs. Furman and in the next weeks.> > Thanks, >

[Guest guest]

Andy - DX 97, FR TX 99-2000. Then all quiet (except babesiosis) for a nice long time. Counts started drifting down about 12-18 months ago - thanks -

In a message dated 8/11/2010 8:14:58 P.M. Eastern Daylight Time, unclewolf@... writes:

,

I reread your email and noticed that half the information I'm asking for is already there.

I'm especially interested in progression, both before and after your FR.

Andy

What next?

I thought that for once I would post about myself and see what you geniuses can come up with.

DX in 1997, FR in 1999-2000

A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did a number on red counts.

Now being plagued with low HGB (flirting with the 10 mark), low PLTs (flirting with the 100 mark), and pretty intense fatigue and very low energy.

Any cool ideas? Am seeing Drs. Furman and in the next weeks.

Thanks,

[Guest guest]



,

You're talking about counts shifting down. How about your white count and especially your ALC? Not mentioning them makes me think that they are not very high. Is that true?

How about enlarged lymph nodes and spleen?

You mentioned in a different e-mail that your B12 level is low. That certainly calls for B12 supplementation.

Use 100 mg B12, the kind that you dissolve under your tongue, it may absorb into the blood better. Recheck your B12 after a couple of month. If its still low, you may ask your drs for B12 injection.

It would be wise to also check your vitamin D levels. I just had mine checked and it was low even though I had been taking 2000 IU of D3 per day (I went to 4000).

You may also check your zinc, copper and plasma iron levels. Copper gets high and zinc low as CLL progresses. Zinc controls copper, so raising your zinc supplementation to 50 mg per day may boost your zinc level, fending off infections and control your copper at the same time. (High copper is used by CLL for angiogenesis).

As to iron, if its low that itself may account for sagging RBC. People take Ferrex 150 for boosting serum iron.

As far as chemo stuff, I leave that to Drs. Furman and . If FR (or FCR) doesn't work this time around, lenalimide and/or ofatumumab might be alternatives. Dr. Furman will know about the availability of CAL101 which is still in phase 3 trial and seems to be easier on the immune system than chemo or monoclonal antibodies.

Andy

What next?

I thought that for once I would post about myself and see what you geniuses can come up with.

DX in 1997, FR in 1999-2000

A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did a number on red counts.

Now being plagued with low HGB (flirting with the 10 mark), low PLTs (flirting with the 100 mark), and pretty intense fatigue and very low energy.

Any cool ideas? Am seeing Drs. Furman and in the next weeks.

Thanks,

[Guest guest]

Andy - thanks for your thoughts - I am aware of the vitamin issues, and generally take care of that stuff. My D was OK, am now waiting for new results for B12.

Enlarged nodes, you betcha.

Spleen, just the tip palpable.

WBC totally normal and stable. Lymph% and lymph# rising, not dramatic, but steady, lymph% about 65, lymph# just under 5000.

Have been advised against taking iron as it disguises what is really going on.

The whole thing appears to be a repeat performance of '99, lymphadenopathy and low RBC and PLT counts. My disease likes to manifest itself leukemically rather than lymphatically. The blood gets more cluttered with lymphs, and does not produce enough red stuff.

I currently see my choices ranging from nothing to a few cycles of Rituxan (or Ofatumumab), to Revlimid/Thalomid (Dr. 's magic potion). I'm not sure I'm ready for CAL-101.

We'll see what good old doc Furman says next week. My guess is, do nothing. But I should would like not to feel like a dead man walking.

In a message dated 8/12/2010 11:26:15 A.M. Eastern Daylight Time, unclewolf@... writes:

 ,

You're talking about counts shifting down. How about your white count and especially your ALC? Not mentioning them makes me think that they are not very high. Is that true?

How about enlarged lymph nodes and spleen?

You mentioned in a different e-mail that your B12 level is low. That certainly calls for B12 supplementation.

Use 100 mg B12, the kind that you dissolve under your tongue, it may absorb into the blood better. Recheck your B12 after a couple of month. If its still low, you may ask your drs for B12 injection.

It would be wise to also check your vitamin D levels. I just had mine checked and it was low even though I had been taking 2000 IU of D3 per day (I went to 4000).

You may also check your zinc, copper and plasma iron levels. Copper gets high and zinc low as CLL progresses. Zinc controls copper, so raising your zinc supplementation to 50 mg per day may boost your zinc level, fending off infections and control your copper at the same time. (High copper is used by CLL for angiogenesis).

As to iron, if its low that itself may account for sagging RBC. People take Ferrex 150 for boosting serum iron.

As far as chemo stuff, I leave that to Drs. Furman and . If FR (or FCR) doesn't work this time around, lenalimide and/or ofatumumab might be alternatives. Dr. Furman will know about the availability of CAL101 which is still in phase 3 trial and seems to be easier on the immune system than chemo or monoclonal antibodies.

Andy

What next?

I thought that for once I would post about myself and see what you geniuses can come up with.

DX in 1997, FR in 1999-2000

A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did a number on red counts.

Now being plagued with low HGB (flirting with the 10 mark), low PLTs (flirting with the 100 mark), and pretty intense fatigue and very low energy.

Any cool ideas? Am seeing Drs. Furman and in the next weeks.

Thanks,

[Guest guest]



,

Thanks for the info. I was on w & w for 4 1/2 years and my WBC steadily rose from 18,000 to over 300,000. My hgb stayed between 10.5 and 11.5 and plt low normal, but then AIHA hit suddenly. I guess, I should have started treatment when my WBC went into the 200,000s but I was asymptomatic and as most of us, in no hurry to start tx. :-:}}

Let us know what the drs decide about your treatment.

It may be a good idea to check your serum iron and if it's too low, ask dr. Furman/ for advice.

Best wishes

Andy

What next?

I thought that for once I would post about myself and see what you geniuses can come up with.

DX in 1997, FR in 1999-2000

A few Rs since then. Also babesiosis in 2006, a tick disease, gone but did a number on red counts.

Now being plagued with low HGB (flirting with the 10 mark), low PLTs (flirting with the 100 mark), and pretty intense fatigue and very low energy.

Any cool ideas? Am seeing Drs. Furman and in the next weeks.

Thanks,

[Guest guest]

Good news Carol, I'm glad to hear it. I am getting close again and starting to feel a little fatigue. So goes it.

Good luck,

Joan

From: Carol Chapin

Sent: Friday, August 13, 2010 2:50 PM

Subject: What next?

Hi , I wasn't ready to post my ongoing results with ofatumumabyet, but wanted to just throw in a little good news after reading yourpost and question.I've been on steroids, cytoxan, IVIG, RCD, one cycle of PCR thatmessed things up (all of which I've talked about before) all to try tostop the inexorable and critical AIHA. Well, now I'm on ofatumumaband it's surprisingly doing very nicely for me. I never had aninfusion reaction, I do get very tired from it, but once it's down toonce a month it should be easier. But the good news is that my spleenhas already come down from 12cm to 6cm and nothing was budging thatone for ages. AND my hg is up from 10 and at the low point of theyear 8.5 to 12.3 and staying there which it hasn't done since I was onthe intolerable steroids. My wbc are 6.5 and hover there and myplatelets are around 120. My neuts are normal. I almost look curedon the counts, but still carry lots of fatigue around but that wasalways the hallmark of my CLL.Anyway, just this brief excursion into a so-far good journey withofatumumab. Now the thing is of course we don't know if it will holdup once off of it, or if so, for how long. But I'm just glad to beout of critical trouble with the AIHA and have my counts almost normalfor the first time in 11 years.I'm sure Dr. Furman will give you very good advice, . Sorry it'srearing its head again, and hope it can be struck down again for agood long time! Best to you, Carol

[Guest guest]

Hi and all, for the ofatumumab treatments, I'm doing protocol

according to the drug company. With a few tweaks. I started with the

300mg of the drug in 1000ml saline solution the first week. It's

basically a test to see if you're allergic, a fraction of the dose. I

was maxed out with meds: 1000mg tylenol, 10mg antihistamine, 100mg

prednisolone and they all knocked me out. I had no reaction to O.

The second week I did the full dose of ofatumumab which is 2000mg (and

it doesn't matter if you weigh 40 pounds or 400 pounds apparently,

it's 2000mg). That was also in 1000mg saline solution. The first two

times the infusion rates are building more slowly. By the third

infusion (this is once a week for 8 weeks and then once a month for 4

months), you do the full dose but faster. The infusion rate goes up

to 400ml per hour.

I didn't tolerate the 400ml per hour. I came home and fell down a

rabbit hole for 4 hours without waking up. Like a sledge hammer had

hit me. So I thought what the heck, this doesn't make sense for a

couple of extra hours' infusion. I went to my max of 250ml per hour

the next week and it did make a difference. I didn't collapse upon

getting home.

Over the next two weeks we started cutting down the dosage of premeds

to 650 tylenol, 60 and then 40mg pred and 5mg antihistamine. I tend

to be very sensitive to medications, so these amounts were much better

for me and still no reaction to O.

I was very tired after the infusions, lasting the entire week from

infusion 3 through infusion 5. After my 6th one last Thursday, I am

tired but not hugely so.

I saw the spleen start reducing in size by the 5th infusion and my hg

went up to normal about that same time. So that was after about 4

infusions. I think Arenson mentions in his blog that it took 3

months for him to see the nodes start coming down. I know he's doing

a different procotol (ofatumumab with revlimid), but I do think the

ofatumumab just takes some time to work.

As I said before, I went the Rituxan route and ofatumumab (the

humanized version of R) does seem for me to have done good and be

holding me there. We'll see what happens when I get off of it.

Another woman my doc is treating with O is doing ok but her counts

aren't as good as mine. She had been heavily treated before doing O

with very low platelets and my doc thinks this could account for the

difference. In fact, he and I were both thinking this might work well

for people who were NOT the target in the clinical trials, i.e. not

heavily treated. Many of the results from those trials showed large

amounts of infections and pneumonias. But remember these people have

been through the wringer already and came into the trials basically

for salvage treatment.

When I ask my doctor about the difference between Rituxan and O, he

does not equate them as I had heard before. Even though O is " just " a

humanized version of R, apparently it works very differently and as my

doc says, just by attaching to the protein differently, it is a

different drug. Hmmm, lots of differents in there! All I know is

that O works much better for me than R.

As for R and O reactivating certain viruses, I believe there are a

number of chemos out there that do that. I have been on acyclovir, an

antiviral, prophylactically for 3 years since I was first put on

steroids for the AIHA so I wouldn't get shingles. No real side

effects from it.

AIHA (for Joan who asked) is an autoimmune disease that destroys your

own red blood cells. It can be quite severe or not, all depending on

whatever. The randomness of my immune system is the way I see it.

I hope more people have good results from ofatumumab and will keep you

posted on what's going on. Take good care, Carol

[Guest guest]

You need to get the actual figures from your GP Phil of all your

test results, together with the reference range for each of the tests done. Ask,

ask your GP to test the following blood levels: ferritin, vitamin B12, vitamin

D3, magnesium, folate, copper and zinc. if any of these are low in the

reference range, no amount of thyroid hormone is going to be to be properly

absorbed into your cells, even if your adrenal function is OK. How much Nutri

Adrenal Extra are you taking, and what increases have you made since starting

it in July?

The serum thyroid function tests that the NHS do only test the

level of thyroid hormone and pituitary hormone in your blood. They do NOT test

to see how much thyroid hormone is being used by the cells, and this can only

be told by getting a 24 hour urine test done through Genova. You need to see an

endocrinologist who has a speciality in thyroid disease, not one who

specialises in diabetes, as most do. You should ask for a referral to a doctor

of your choice if there is nobody in your area. Where about in the UK do you

live btw?

Luv - Sheila

Don't know where I'm at the moment. Have been treating self with NAX since July

since salivary test revealed low adrenals, and seemed to be helping me to get

through but relapse to previous hell on Tuesday. Saw doc - more blood tests but

am sure they won't reveal raised TSH.

Saw endo in July who did many tests (still waiting for my doc to get the

numbers to me!)but he only concluded that presence of anti-bodies meant at

increased risk in the future! What about symptoms? I said - think he'd gone

deaf...

Don't know what to do now? Does relapse mean adrenal support not enough?

(Relapse is to flu-like symptoms - fuzzy head/brain fog can't do my job type

stuff mostly)Or should I chuck it in and attempt to see someone like Dr

Peatfield? Do I even have thyroid - doubting it at the moment but nothing else

seems to explain my story?

Been thinking of my poor old mum too - she was on anti-depressants for years

and had spells in psychiatric hospitals - even the family had her down as a

hypochondriac and, though we never discussed it, I know she was diagnosed with

underactive thyroid later in life - is that what was wrong all the time? I

certainly feel as if I'm going crazy at times..,

What do you reckon, good people?

Sorry for the rant - don't know where else to go...

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