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bottkota

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Reply with quote  #1 
The doctor I saw today is putting me back on another z-pack actually back 2 back z-packs so 10 days worth of antibiotics 2 see if we can get me over this crud I got after Christmas. My question is......is it okay 2 continue the Edge CAM along w/ the antibiotics? When I was on the z pack after xmas I stopped my supps....now since I will have 10 days of this again I don't want 2 have to quit them. Please let me know. My platelets are having a tough time again. So I took last week off from treatment and the platelets went up to 245000. It has been a long time since they have been that high. Sucks that I have to delay treatment in order to get them to that level.


Cathi
edge

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Reply with quote  #2 
Cathi:

As studies have found, and as the FDA concluded: "Although pharmacokinetic interactions with substrates, inhibitors, or inducers of CYP isoenzymes have been reported with other macrolides (e.g., clarithromycin), they have not been reported to date with azithromycin. Azithromycin appears to have no effect on the CYP isoenzyme system and interactions mediated by this enzyme system would not be expected to occur".  Therefore no adverse interactions with any of the components of Edge-CAM would be expected.  And of course, as I have already noted, several of the components, most notably melatonin (20 mg typically, up  to 60+ mg as needed), have antithrombocytopenic effects, that is, they counteract low platelets and may help to raise levels.

For what its worth, unless platelet levels are in a very low danger danger zone, I counsel continuing chemotherapy but with accompanying prophylactic antibiotic therapy, since that the real-world danger of myelotoxicity from chemotherapy is essentially risk of infection, and that risk itself must be balanced against he risk of treatment interruption.  But that is an individual judgment call.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com



bottkota

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Reply with quote  #3 
sounds good.  I started my z pack on Tuesday and have continued with all the Edge CAM supps.  I did stop all supps while I was on my last z pack because I wasn't sure about interactions but as soon as it was done I started right back up.  I have been taking 30 mg of melatonin a night for quite some time and my platelets have still been having a tough time.  I will continue on with the 30 mg just to try and keep them up to where they were on Tuesday.  It just sucks that my body needs an extra week or two to get itself back up to where it needs to be in order to have chemo.  But as long as it continues to give me NED well then I guess I will take the good with the bad and continue along this journey! 

Cathi
Sstefano

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Reply with quote  #4 
Hi Edge,

Since adriamycin did not work, the doctor put me on eribulin 3 weeks ago. It seems to work which is a great relief for me.

Can I take the Edge CAM supplements with eribulin?

Thank you,
Svetlana
edge

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Reply with quote  #5 
Cathi, Svetlana:

Cathi:

The effective melatonin dosing level shows considerable inter-individual variation.  So for example, although 20 mg/d is most typical, the pilot biological study of cancer–related thrombocytopenia by Paolo Lissoni and colleagues (Oncology, 1995) used 40 mg/d to achieve normalization of the platelet numbers in 70% of patients, and in field experience I receive, some patients may require 60 mg/d (all unproblematic).  So you may be an outlier and require higher dosing to help  achieve platelet normalization, and a trial of 40 mg for 7 days, escalated to 60 mg if needed, may be worthwhile, and even if full normalization is not achieved, as long as platelet levels rise significantly, the added protection against infection provided by prophylactic antibiotic therapy may be sufficient to minimize risk and warrant earlier re-commencement of treatment.

 

Svetlana:

May be worth a try.  Let  me know how things fare, and best fortune to you.

Yes, Edge-CAM would be unproblematic with eribulin (Halaven) - which is a good choice, by the way, rather underutilized to date.  We have extensive data demonstrating that eribulin does not inhibit the oncology-related hepatic CYP enzymes CYP1A2, CYP2B6, CYP2C8, CYP2C9, CYP2C19, CYP2D6, CYP2E1 or CYP3A4 at relevant clinical concentrations. 

Best fortune!



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com


Sstefano

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Reply with quote  #6 
Edge,

Halaven works great for my liver. I had 2 cycles, 2 weeks on, 1 week of, so 4 treatments. My liver function is almost back to normal, I lost 27 lb of water retention and slowly started to gain my strenght and weight back.

I have a new problem though. I have a lump in the armpit which seems to be growing in the last 2 weeks. What does it mean? Should I talk to the doctor to change the treatment? I don't have many options left. It is interesting that taxol worked good for the lymph node and chest but did not do much for the liver. Is halaven just the opposite?

This is so scary and confusing.

Your opinion is greatly appreciated!

Thanks,
Svetlana


edge

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Reply with quote  #7 
Svetlana:

It is too early to move on from eribulin (Halaven), as it can continue to provide powerful anti-metastatic activity, and the liver is of more consequence than lymph nodes. 

However, definitely have the axillary lump you are feeling checked out - to be safe, although it occasionally happens that there is no tumor flare-up in the very initial phase of a new chemotherapy agent which then subsides, and in addition, chemotherapy does not affect  all organs and viscera at the same speed so there may still be a nodal benefit, and the liver results to date  are promising. Experimentally, if it should prove necessary, it may be possible to later add a low or metronomic dose of a taxane, but we need more mature scan results to make that determination now..
 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

   
Sstefano

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Reply with quote  #8 
Edge,

I started to wheeze last week and the chest xray showed progression. Apparently eribulin works great on the liver but not on the lymph nodes. I will have scans and depending on the scans I will go on irinotecan ABT888 trial.

I am so upset that eribulin only worked for 2 cycles, 4 infusions. Somebody at the clinic had the same experience. Why those drugs work for such a short time? Actually it still works great for the liver but now the lung is behaving. It was opposite with taxol.

What is your opinion about this trial?

Thank you!
Svetlana
edge

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Reply with quote  #9 

Svetlana:


As to the irinotecan (Camptosar/CPT-11) + ABT-888 (veliparib) trial, we have preclinical data that suggested these two agents together are synergistic, and we also have some clinical data that each of these two agents are active in metastatic breast cancer (MBC) although the trial appears to be the first clinical setting in which they are being combined. 

 


However, I believe you are chemonaive for a number of potentially effective agents and combinations thereof: the new-generation chemotherapeutic agents gemcitabine (Gemzar), vinorelbine (Navelbine), liposomal anthracyclines (Doxil/Caelyx, Myocet), the platinum cisplatin, the epothilone ixabepilone (Ixempra), and the taxanes docetaxel (Taxotere) and nab-paclitaxel (Abraxane), but correct me if I am wrong.  

 

Given that, it strikes me you have several traditional regimens yet to be deployed before a clinical trial becomes more attractive.  One strategy:

 

(1) since your lung disease appears to have been responsive to a taxane (in your case paclitaxel (Taxol)), a trial of the "GD" (gemcitabine (Gemzar) + docetaxel (Taxotere)) regimen may be worthwhile, or of the highly active GP (aka, "Gem-Cis") regimen of gemcitabine + cisplatin.  In addition:

 

(2) anthracycline rechallenge is indeed another option but I would strongly suggest a liposomal doxorubicin ("LD', in the form of Doxil/Caelyx, Myocet) coupled with either gemcitabine (LD-Gem) if not previously exposed or vinorelbine (Navelbine), LD-Vin, both trading on the fact that you were long-term stable on AC in the past. 

 

(3) a third option after these should it be needed would be the  FDA approved doublet, ixabepilone (Ixempra) + capecitabine (Xeloda) called the "IX" regimen, can then be reserved for later stage rescue should that be necessary.

 

There three options:

 

(1) GD: (gemcitabine (Gemzar) + docetaxel (Taxotere)) OR GP (gemcitabine + cisplatin)


(2) LD-Gem or LD-Vin (liposomal doxorubicin + either gemcitabine or vinorelbine)


(3) IX (ixabepilone (Ixempra) + capecitabine (Xeloda))

 

appear to have sufficient potential for benefit in metastatic visceral disease to warrant trial deployments before recourse to the clinical trial suggested.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

Sstefano

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Reply with quote  #10 
Edge,

As always, I appreciate so much the information. It is nice to know that there are other options for me. You are the best!

Sorry about the stupid question. I had a single agent xeloda in Aug 2011 for 6 weeks and single agent weekly adriamycin because of doxil shortage in Dec 2011 for 3 weeks. Both drugs acted like a fertilizer for the cancer, especially in the liver. Can these drugs still work well in combination with another chemo? It will be great if they do.

Thank you!
Svetlana
edge

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Reply with quote  #11 
Svetlana:

My responses inline (in red) with your original text:

Edge,

As always, I appreciate so much the information. It is nice to know that there are other options for me. You are the best!

Sorry about the stupid question. It's not stupid at all - it's a good question. I had a single agent xeloda in Aug 2011 for 6 weeks and single agent weekly adriamycin because of doxil shortage in Dec 2011 for 3 weeks. Both drugs acted like a fertilizer for the cancer, especially in the liver. Can these drugs still work well in combination with another chemo? It will be great if they do.
Yes they can, but in different ways:

(1) my observation is that capecitabine (Xeloda) rechallenge can work if the schedule is shifted, from standard dosing to a metronomic (low-dose, continuous) schedule).  Otherwise, given that metronomic Xeloda is not commonly implemented, it should be reserved for the IX regimen (capecitabine (Xeloda) + ixabepilone (Ixempra));

(2)
as to liposomal doxorubicin (Doxil), the data suggests that it can be of benefit relatively independent of prior anthracycline exposure.

Nonetheless, if at all possible, the other regimens I suggested may be preferable, as they represent two agents both of which you would be naive to, increasing likelihood of response.

Thank you!
Svetlana

Glad to help.

Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.co


Sstefano

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Reply with quote  #12 
Hi Constantine,

I need your help again.

I was put on on the following study at Dana Farber

Oral Sapacitabine and Oral Seliciclib in Patients With Advanced Solid Tumors

After one cycle which is three weeks it became clear that it is not working. The AST went to 165. Two weeks ago it was 36. The lymph nodes which are huge at best are stable. I met Dr Sara Tolany who is the study doctor and she recommended

Gemzar
Ixempra
Cisplatin

I was told that each has 10-15 percent chance to work.

Navelbine was on the list but she did not recommend it. I tried very hard to push for a combination but she did not agree. On Monday I will meet my regular doctor Ann Partridge and I will try again to ask for combinations.

If she is not opened to this, what do you think I should do? i have no much time to go to different doctors because my liver is progressing quickly. The CT 4 weeks ago showed almost normal liver, not good lung and lymph.

This is my history again.

1997 AC 4 cycles
2006 Xeloda 6 cycles
10/2010 - 7/2011 carboplatin 10 cycles slight progression
8/2011 - 9/2011 xeloda 2 cycles major progression
9/2011 - 11/2011 taxol/avastin 10 weekly treatments progression in liver, good lungs
12/2011 adriamycin 3 weekly treatment major progression, very sick
1/2012 - 2/2012 eribulin 2 cycles. Miracle for liver, progression in lungs and lymph
3/2012 - the study
BRCA1

I am sorry to bother you again but at Dana Farber they are so set in stone not to do combinations. CMF was dismissed too.

By the way your private box is full. I hope you see this message.

Thank you,
Svetlana
edge

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Reply with quote  #13 

Svetlana:


No apologies needed - I'm here to help.  I give my guidance below inline (in red) with your original text:


Hi Constantine,

 

I need your help again.

 

I was put on on the following study at Dana Farber

 

Oral Sapacitabine and Oral Seliciclib in Patients With Advanced Solid Tumors

I would not have advised the trial but I can well appreciate any oncologists' search for hope in the trial setting.

 

After one cycle which is three weeks it became clear that it is not working. The AST went to 165. Two weeks ago it was 36. The lymph nodes which are huge at best are stable. I met Dr Sara Tolany who is the study doctor and she recommended

 

Gemzar

Ixempra

Cisplatin

 

I was told that each has 10-15 percent chance to work.

My experience and review of the data might suggest these as overly conservative estimates, even in later line disease.

 

Navelbine was on the list but she did not recommend it. I tried very hard to push for a combination but she did not agree. On Monday I will meet my regular doctor Ann Partridge and I will try again to ask for combinations.

I can appreciate your efforts, and of course you know my views - many oncologists resist combination therapies, in part insufficiently perceiving the guidelines over which there is no inconsiderable debate.  The ESO-MBC Task Force International Guidelines for Management of Metastatic Breast Cancer: Combination vs Sequential Single-Agent Chemotherapy (JNCI, 2009) are commonly cited as authority.  But in fact although ESO-MBC Taks Force did recommends sequential monotherapy as the preferred choice in advanced disease, that was only, and I quote, "in the absence of rapid clinical progression, life-threatening visceral metastases, or the need for rapid symptom and/or disease control". 

 

In addition, as Rowan Chlebowski at UCLA pointed out, two other randomized clinical trials evaluating combination versus sequential chemotherapy actually met the posed criteria of the ESO-MBC Task Force and should have been included but were not, and these trials showed that combination treatment was associated with statistically significantly increased objective response frequency (46% vs 25%) and although without a survival benefit for patients without liver metastases, combination therapy increased overall survival for those with liver involvement (doubling the median overall survival).

 

I strongly concur with colleagues like Chlebowski, Cliff Hudis at MSK and dozens of others that the decision must be driven by the imperatives of

(1) rapidity of clinical progression, and/or

(2) need for rapid disease control, and/or

(3) threatening visceral metastases (liver, lung),  and/or

(4) need for rapid objective response. 

 

This is also in keeping with other findings I previously cited to you, as well as the conclusions of the  Cochrane Breast Cancer Group that  "for overall survival there was a statistically significant difference in favour of the combination regimens" and that "Combination regimens were also associated with significantly better time to progression . . . and response". It is for these reasons that I cited my preference for the combination regimens I did, especially in the light of your liver progression.

 

If she is not opened to this, what do you think I should do? i have no much time to go to different doctors because my liver is progressing quickly. The CT 4 weeks ago showed almost normal liver, not good lung and lymph.

Should the oncologists continue to stand against combination despite you're explicitly indicating that you recognize but fully accept the tradeoff of the potential for some increased (but still manageable) toxicity (and it helps I often find to state that strongly), then short trial courses of these monotherapies, likely starting with gemcitabine (Gemzar) as we have the most data on its benefit as salvage therapy, followed by ixabepilone (Ixempra), and then cisplatin is reasonable if markers and response are monitored frequently and aggressively. And even as monotherapies, these agents hold considerable promise, and I have seen some remarkable responses in visceral MBC disease, so this should not be viewed as futile at all, especially if pursued in rapid sequential fashion until sufficient disease control is achieved.

 

This is my history again.

 

1997 AC 4 cycles

2006 Xeloda 6 cycles

10/2010 - 7/2011 carboplatin 10 cycles slight progression

8/2011 - 9/2011 xeloda 2 cycles major progression

9/2011 - 11/2011 taxol/avastin 10 weekly treatments progression in liver, good lungs

12/2011 adriamycin 3 weekly treatment major progression, very sick

1/2012 - 2/2012 eribulin 2 cycles. Miracle for liver, progression in lungs and lymph

3/2012 - the study

BRCA1

 

I am sorry to bother you again but at Dana Farber they are so set in stone not to do combinations. CMF was dismissed too.

Please, I am only to glad to help.

 

By the way your private box is full. I hope you see this message.

Thanks for alerting me to this - I have cleared it.

 

Thank you,

Svetlana

 

Let's see what Ann Partridge has to say Monday, and compare notes at that time.

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

Sstefano

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Reply with quote  #14 
Edge,

Thank you so much for your reply.

The doctor today offered the following

1. CMF
2. Gemzar
3. Navelbine

Ixempra was not on the list at all but she put cisplatin once I asked about it.

I started CMF today. It better works quick because just in 2-3 days I gained around 10-13 lb water. I am otherwise very skinny.

What do you think of CMF?

Thank you for your help. You are such a blessing!

edge

Chief of Research
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Reply with quote  #15 
Svetlana:

Edema Control
First, as to the swelling (edema / angioedema), even when tumor-induced it is treated like general edema.  The primary therapy when weight gain from fluid retention is 5 or more pounds in a week is a systemic diuretic; either furosemide (Lasix) or hydrochlorothiazide (HCTZ) is typical.  I favor furosemide (Lasix) initially for rapid control, then maintenance on HCTZ or on low-dose Lasix, monitoring carefully for hypotension (so avoid sudden rising from a prone or seated position).  In addition, there are non-drug supportive measures you can take:

  • Elevate feet often (sitting in a chair with feet on a stool with  pillow, or in the bed or couch with feet raised on two pillows/cushions).
  • Don' stand for long periods.
  • Avoid tight clothing.
  • Don't sit with legs crossed.
  • Reduce your salt intake before diuretic, but once on diuretic therapy, maintain normal balanced diet.
  • If your swelling is severe, consider wearing Jobst stockings (a form of gradient compression stockings) or TED hose (Thrombo Embolic Deterrent stockings, a form of anti-embolic hose to avoid potential for clots).
  • Weigh daily to assure weight gain remains below 5 pounds in a week.
These precautions are critical to minimize the likelihood of clot disorders and their consequences, and are more for anti-embolism control than for the fluid retention itself.

Chemotherapy
Second, as to the chemotherapy, CMF can be effective.  I would tend to favor gemcitabine first, followed by either cisplatin or vinorelbine, but a short trial of CMF isn't unreasonable (and some MSK experts feel it is underutilized), and we'd be looking for response and measurable benefit within a week to ten days, otherwise I would move immediately to the other options.

Guidance
But it's imperative to do a multi-modal approach, both the chemotherapy as well as defensive intervention of anti-embolism control which hopefully will bring down the fluid retention rapidly and take you out of thromboembolic risk. So press for this intervention, and monitoring weight scrupulously, and report it back to you oncologist (for me, I advise all patients with > 5 lb weight gain / week to use TED hose or equivalent, prophylactically, and slap them on at least 20 mg Lasix, higher if there  is marked edema or any pitting).

Let me know how you fare, and explore these options aggressively with your oncology team.

Best fortune to you, and I'm here for anything you need.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com 
Sstefano

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Reply with quote  #16 
Edge,

Thank you so much for your response.

It has been 10 days since CMF. After 5 days the water started to go down slowly but in the last two days I am getting some more swelling again and the pounds are staying around the same or even 1-2 lb more.

A neck lump almost vanished but it popped very quickly right before I started the CMF so I am not sure if it was even cancer. The huge armpit lump stays the same.

The bottom line is that I am not sure if I am responding at all. It looked good a few days ago but with the water retention in the last two days I am not sure anymore.

Do you think I should ask to switch to gemzar or is too early? I will probably see the doctor on Monday which is two weeks after the CMF.

Thanks you as always and sorry if I am a little vague.
Svetlana
edge

Chief of Research
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Reply with quote  #17 
Svetlana:

It's a bit early but I would still counsel pressing for the gemcitabine (Gemzar): I am not confidant: (1) that CMF (as opposed to E-CMF, enhanced with an anthracycline) has compelling data of higher efficacy, as shown by Andrea Rocca and colleagues in Italy at ASCO 2011, nor (2) that it is significantly active in metastatic disease (Elizabetta Munzone and colleagues at the European Institute of Oncology (Ann. Oncol 2011)), and its reputation in TNBC is almost exclusively in he adjuvant setting, especially  if compared with  third generation agents like gemcitabine (Gemzar) which can be highly active in metastatic breast  cancer with visceral involvement. 

In any such complex clinical circumstances it is impossible to be certain, but playing the odds and assessing likelihoods based both on the data to date and on field experience reported, I would judge a higher probability of response and clinical benefit on the side of Gemzar  (and if needed the  other regimens I suggested), and I would want to see some very early response which we are probably not seeing  at present on CMF, so yes, I would advise pressing the matter with your oncologist  on Monday.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com 



Sstefano

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Reply with quote  #18 
Edgeand Kathy,

I am sorry that I stole this thread.

I had a horrible third week on CMF but the the doctors could not give me anything the second because of low blood count. Yesterday I had a doctors appointment. I expected gemzar but since the blood electrolities were very bad, they gave me navelbine which I hope is a miralce.

I have 30 lb water retention which is about 1/3 of my weight. I cant move at all and need help getting up the chair. For the first time the doctors were very negative. The navelbines desicion was based on the easiest to tolerate.

Doctor Ann Partidge said that she could not give me a combination right now because she would kill me. She consultated outher doctors and they all said Navelbine probably because ai am getting so bad.

Dear Edge, this is my Easter next weekend and I think yours too. lets hope for a Easter miracle.

Thank you!

Sorry to bother you but have you seen navelbine working on TNBC?

Thanks,
Svetlana
edge

Chief of Research
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Reply with quote  #19 
Svetlana:

Sorry to hear of your continued travails but yes, I have seen some significant and clinically relevant response on vinorelbine (Navelbine), even as monotherapy - it is an excellent drug, and studies show in fact - and this is important here -  that it is non-inferior to both gemcitabine (Gemzar) and capecitabine (Xeloda). 

I can appreciate Ann Partridge's approach - she is an excellent breast oncologist - and her concern re the danger of combination therapy when myelotoxicity, especially leukopenia (low white blood cell counts) and thrombocytopenia (low platelet levels) and possibly also neutropenia (low neutrophils) have  set in.  I am more radical on this front and against the standard of care: the danger  from myelotoxicity is from infection, and for me I have to weigh that danger against the danger of mortality from progressive disease, so I advocate placing - with the patient's express understanding and consent - the patient on prophylactic antibiotic therapy to mitigate risk of infection while continuing lower dose but still combination therapy.  It is the devil's dilemma but I deal with a number of European cases where oncologists, just in cases of in extremis circumstances such as these have deployed the more aggressive treatment under such a potential safeguard (and have seen successes), but admittedly this is against the standard and like so much in advanced disease  decision making, is a calculated gamble (as of course also is deploying less aggressive therapy), and most (but not all) oncologists are understandably highly adverse to taking such a strategy.

So otherwise the Navelbine is a shrewd compromise and strategy with not inconsiderable promise of benefit, and yes, we share the Eastern Orthodox Easter this Sunday, and you will be in my prayers for what I call in Greek the whisper of a spiritual kindness that we both know can happen, for a believer who so much deserves it.

Here's to the Kindness of Easter.

Best  fortune from a friend,
Constantine

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