Moving forward - 1252591

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watu
Moving forward - 1252591

I just want to share with you all the recent developments on my father's disease.
So far, we have gone through 2 cycles of Taxotere, which for now is being given at 75% of the 75mg/m2 dose, i.e. about 60mg/m2. Side effects are being fairly manageable, with some fatigue and nausea limited to days 4-8 after the infusion. He also takes Prednisone 25mg as a 3-day medication before, during and after the treatment, rabeprazole once a day for the whole period and metoclopramide when required. Taxotere is given with ondansetron, ranitidine and dexamethasone 8mg.
Leukopenia is being mild, with WBC count going down to 3.5k/uL about 7 to 10 days after the infusion, but going back up to normal values before the next round.
For round #3 and #4 we will probably try to go up to the 100% of the Taxotere dose.

Last week, dad had an MRI to his head to better understand the status of the cerebral mets that were identified with the last CT scan. Results: 2x lesions (6mm and 7mm) confirmed on the left side and a 3mm micro-lesion detected on the right side.
In addition to this, it is reported:

- local leptomeningeal strain (?) of the perilesional furrow (?) of the 6mm lesion (I've tried to translate)
- multiple minor gliotic areas

We will discuss this with our oncologist, but I cannot hide my concern with that "leptomeningeal".

Is there enough data to think about leptomeningeal carcinomatosis? Apart from some fatigue and a few episodes of dizziness over the last months, dad's conditions are pretty good.

And what are the gliotic areas?

Thanks for your support.

Mike

Dr West
Reply To: Moving forward

I'm sorry, but there are just too many holes here to try to piece it all together. I am not confident enough about the translation to comment here. I think you need to speak directly with his doctor. I don't want to make wild guesses.

Also, I really don't want to have GRACE become a place where people just speculate and feed a frenzy of anxiety about imaging and pathology reports instead of talking with the people who they should be talking to about them.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

I understand, Dr. West. Thank you.
Today we met the oncologist, the radiologist and the radiotherapist and we had the chance to discuss the MRI findings. So, there are 3 confirmed metastatic lesions (7, 6 and 3mm) and an "unclear" local leptomeningeal involvement of the brain furrows (sulci) nearby one of these lesions.
They cannot exclude that it might be focal leptomeningeal carcinomatosis at a very early stage as direct extension from the contiguous brain met, but there is not enough data to get a clear conclusion.
We are certainly scared of this possibility.

Based on your experience with lung cancer patients, can leptomeningeal carcinomatosis be induced locally from a contiguous brain met or is it more likely to have a systemic development?

By the way, we have agreed that it makes sense for now, being the disease mostly asymptomatic, to go through the 3rd round of Taxotere and have a CT scan to check the response. Also, we will possibly have another MRI in about 1 month to better understand the evolution of these lesions in the brain and consider gamma-knife.

Mike

Dr West
Reply To: Moving forward

I don't know exactly about leptomeningeal carcinomatosis being "induced" by brain metastases, but it is somewhat associated with it. I haven't seen clear studies speaking to it, but I would say that there is a general perception that leptomeningeal carcinomatosis is more of a concern in someone with pre-existing brain metastases.

That said, I would also note that it's not especially uncommon to have questionable findings like this on a scan in someone who doesn't fit that picture. Sometimes these people manifest more convincing evidence of meningeal carcinomatosis later, but not always. I think it makes good sense to go by what you're seeing clinically rather than having too much driven by ambiguous imaging findings.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

Quick update and happy to share some good news with the rest of the community.
My dad has just had a CT scan after 3 cycles of Taxotere. Results:

- Almost complete regression of all the 3-4mm nodules in the right lung
- All lymph nodes (mediastinal, superclavear and axillary) back to normal size, except one (13mm, hilo-pulmonary)
- One lesion in the liver reduced to 4mm (from 10mm in Dec.), two more lesions stable at 4mm.
- Osteolytic lesion in the XI rib no longer detected
- Brain mets slightly reduced, although not significantly. They were 7.5mm and 6mm, now 6mm and 4.7mm.

I understand this might be interpreted as a good response and we are excited with it!
Taxotere is being tolerated well, with just some fatigue and mild leukopenia mostly limited to days 4-8 after the infusion. His oncologist is keen to keep him on the 75% dose, being this well tolerated and, apparently, fairly effective. We’ll go through 3 more cycles now.

Still open the debate on the brain mets. As they seem to be stable and still asymptomatic (nobody was really expecting a significant improvement from Taxotere on them), one option is to do nothing for now and possibly try to treat them with Tarceva at a later stage. The other option would be to do cyberknife. Any idea on what is really common practice in a situation like this would be appreciated.

The CT scan has also detected a blood clot in the right femoral vein and this is now being treated. He has just started Fluxum (parnaparin) and, once again, we are a bit concerned about the impact on his renal insufficiency. I’ve learned from GRACE that Lovenox is usually the choice, but I don’t know if there is much difference with Fluxum. Is Lovenox more appropriate for lung cancer patients?
We are trying to get an opinion from a nephrologist about the usage of this kind of anticoagulants in patients with renal insufficiency, but it is really difficult to find competence for such a specific situation.

Thanks for your valuable support. Mike

dr. weiss
Reply To: Moving forward

Parnaparin is a low molecular weight heparin, which puts it in the same class as lovenox. Actually, while lovenox is in very common use in the US, it was actually a different low molecular weight heparin that was proven superior to coumadin in our population anyway!

You tagline (see everyone how helpful those are!) mentions EGFR mutation. In case the question of leptomeningeal disease proves real, you may find the following post of interest: http://cancergrace.org/lung/tag/leptomeningeal-carcinomatosis/

watu
Reply To: Moving forward

Thanks Dr. Weiss.
We'll go on with Parnaparin and try to monitor closely the kidney function. If we are lucky, after 7-10 days we might be able to reduce the dose to the maintenance level.

In the meantime, we also need to take a decision about the brain mets...treat them with cyberknife or just wait and see if they stay stable and asymptomatic.
I'm actually also concerned, based on what I've read on GRACE, about the possible effect of the anticoagulant on the brain mets. I don't really know if that applies to this specific situation.

Thank you. Mike

certain spring
Reply To: Moving forward

Watu, glad to hear your dad is doing well on taxotere. Have you considered WBR for the brain mets, or does your father prefer not to go down that route? All best.

catdander
Reply To: Moving forward

Yes certain spring I wondered the same. Too if he had a little bit of response to his brain mets I wonder if doing nothing is thought to be a good option/safe to watch while on continued taxotere treatment.

And thank you Dr. Weiss for the prompt on members adding tagline/signatures. They are so helpful when seeking info.

watu
Reply To: Moving forward

Yes, thanks so much for sharing your thoughts.
That's our main doubt today. Our radiotherapist would like to avoid WBR for now. Considering that we have identified only 3 brain mets, which seem to be small and asymptomatic, it may be wise to take arrangements for cyberknife instead, which would certainly give less or no side effects. The other option, reasonably valid too, is to monitor them for some time, given that there is no clear sign of progression for now.
Difficult decision to take again, especially because I believe no clear protocol seems to exist for situations like this.

Dr West
Reply To: Moving forward

True -- this is a situation in which there's plenty of latitude for judgment. Good luck...

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

Has anyone experienced severe dyspnea with Taxotere?
Dad is currently dealing with it and it's difficult to identify the real cause... considering that he is on both taxotere and parnaparin (...and, not less important, he is living with just one lung).

Thank you.

Dr West
Reply To: Moving forward

It's possible for the Taxotere to cause shortness of breath directly, but there are also many other possible reasons, ranging from disease progression to pleural fluid, pneumonia, possibly a pulmonary embolus, chronic "benign" lung disease like emphysema (or having surgical removal of lots of lung tissue), and more. Obviously, with so many potential explanations, and even the possibility of a combination of factors, the folks who know the details of his situation and can evaluate him are in the best position to help clarify what might be going on.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

Just decided not to proceed with the 6th cycle of Taxotere, which was planned for next Tuesday. We'll take a break, as side effects are now being hardly tolerated. Dad is really tired these days and he is spending most of his time laying down in bed. The most significant problem is the dizziness, when he stands up, and we are not completely sure it is associated with Taxotere. Any experience with this?
He is being administered dexamethasone, which might somehow help.

The next step is to have a MRI as soon as possible and check the state of his brain mets (they might be also inducing dizziness?). Then a CT scan to check the rest of lesions and possibly start Tarceva.

I'll keep you posted.

Dr West
Reply To: Moving forward

watu,

Like shortness of breath, dizziness can be caused by many, many things, making it hard to take more than a wild guess about what's going on. I wouldn't think Taxotere (docetaxel) would be likely to do this directly, but I've had patients who feel poorly enough on it that they aren't eating/drinking well, or they have such low red blood cell counts that they get dizzy with any exertion. Some chemotherapy drugs can affect the autonomic nervous system that automatically regulates the body's ability to compensate for position changes and increased activity, but that's not very likely with Taxotere.

It sounds like it is likely to be a good time to take a break. The doctors there may be able to offer a better idea of a cause for the dizziness by evaluating the situation more directly.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

Thanks Dr. West for the clear answer.
We'll investigate the situation a bit more in depth over the next few days.
He's certainly not eating/drinking well, and he is also having some episodes of vomiting and diarrhea. I don't know whether this can be a possible cause of the dizziness, but it is certainly not helping him recover.

Unfortunately, I have to say that my main concern relates to that "unclear local leptomeningeal involvement of the brain furrows" near one of the lesions that were found in the brain in the previous MRI.

Thank you. Mike

catdander
Reply To: Moving forward

Hi Mike, I just wanted to let you know you and your dad are in my thoughts. I hope he is able to find a way to gain back some of his "normal" feeling even if it means taking a break.

I hope you will forgive me for moving into a discussion that wasn't asked for and none of my business. I don't usually do this either but you've caught me in an odd mood I suppose.
We had a member ask about reasons for his feeling so well since moving into hospice home care. Hospice is devoted solely to patient and loved ones feeling well. Research (presented at the 2011 ASCO meeting) shows that those who move to hospice at the right time live longer and feel better than those who don't. I don't know how much you know about it or how close your dad is to needing to move onto hospice but it is good to understand what it offers before needing it. I'm glad to have an understanding about it. My husband doesn't want or need to.

A dear friend told me recently how difficult and surreal speaking to hospice was for her as a person with stage IV nsclc. She doesn't need them...yet but needs to be ready. I've come to understand how very different it is for those who have loved ones with a terminal disease compared to those who have a terminal disease. We may be living physically close lives but we definitely aren't living close psychologically.

I won't paste links on the subject but know we have much info on it if you haven't already found it. Remember depending on the type of browser you use you may need to log out before using search.

With respect and apologies for stepping where I've not been asked, (honestly I rarely do this)
Janine

Dr West
Reply To: Moving forward

I certainly understand being concerned about the possibility of leptomeningeal carcinomatosis: that's a scary complication for anyone if it's true.

I also wanted to say that nausea/vomiting and diarrhea are definite potential causes for dizziness, since these symptoms contribute to dehydration, probably the most common reason for a person on cancer treatment to be dizzy.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

Janine, Dr. West,

Thank you both for your replies. Sorry I didn’t manage to write back until now.

Janine: you don’t have to apologize for just sharing your view and thoughts on this situation. They are so precious for us and the rest of the community.
I’m not sure whether we are quite at the point of considering hospice home care, but I need to be realistic as sooner or later we might have to do that. The main problem we may have in the region in Italy where my parents live is that it is not really common practice and it may be difficult to find a good centre. I’ll investigate, as I absolutely agree with you that it may be a very good option for both the patient and the family.

Dr. West: we found low red blood cell counts and low haemoglobin a couple of weeks ago, so the dizziness can certainly, at least partially, be associated with this and the fact that dad is not eating/drinking well. However, we cannot exclude there’s something also related to the brain mets. Dizziness is intermittent during the day, often associated with asthenia, and in addition to this we have noted some loss of hearing and a certain difficulty in the expression (language).
Last week, he had a CT scan and the situation is generally stable, with just the three 4mm-lesions left in the liver, which I believe are absolutely asymptomatic. The brain mets look stable too, but this week he’ll have a MRI to get a clearer picture of the situation.

His oncologist wants to start Tarceva, hoping for a resensitization to the EGFR TKI after the acquired resistance to Iressa last year. Hopefully, Tarceva may also help with the brain mets, but we cannot exclude cyberknife (can they be combined?)

I’ll keep you posted. Mike

catdander
Reply To: Moving forward

Hi Mike, thanks for the sweet response. I hope your dad is feeling ok. I think you may have seen all this but just in case here's a ton of info. Nothing specific to cyberknife but the first one does discuss wbr while continuing tarceva. Too there wouldn't be much down time from tarceva if he were to stop it for cyberknife. Dr. West will comment in a bit.

All best,
Janine

http://cancergrace.org/radiation/2013/02/07/is-it-safe-to-give-tarceva-w...

http://cancergrace.org/radiation/category/brain-radiation/

http://cancergrace.org/lung/category/lung-cancer/general-lung-cancer-iss...

Dr West
Reply To: Moving forward

It's certainly reasonable to try for a response to Tarceva again after a period off of an EGFR tyrosine kinase inhibitor (TKI): I've certainly pursued that approach and sometimes had some success.

As for combining with Cyberknife, that procedure is a one-day event, so I have favored just holding the EGFR TKI for a couple of days before and a day or two afterward. It's unlikely that taking 3-4 days off will have any harmful effect, but it's all too possible in my mind that the untested combined effects will lead to dangerous side effects, so I see no incentive to accept that risk.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

We'll consider that, Dr. West.

I was just wondering whether in a setting like this, where a patient has completed a 4-month chemo-based treatment with relatively good response and the disease seems fairly stable, it would also make sense to take some time off from drugs, especially to save the precious "one-try" re-challenge with Tarceva for later, when the disease may start progressing firmly again.

It might be an interesting option, also becasue the "visible" disease at this stage could also be potentially treated only with cyberknife (both the liver and the brain lesions).

I believe it is again a difficult decision to take.

Dr West
Reply To: Moving forward

That would be exceptionally reasonable and might well be my favored approach in this setting. I see no incentive to pursue more treatment in the setting of previously identified metastatic disease when there is currently nothing to treat. The exception would be continuing an EGFR TKI when it's only because of the ongoing EGFR TKI that you've gotten to the point of no evidence of disease, but in someone with acquired resistance, it makes great sense to be very judicious about using the treatment options available.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

Dr. West, in line with what you pointed out in your previous post, we were seriously considering the possibility of taking a break and delaying the re-challenge with Tarceva at a later stage.
Unfortunately, last week the MRI to the head showed the presence of a new small lesion (6mm) to the brain. The other 3 are stable since they were detected in early January (7mm, 6mm and 3mm).
No doubt they will need to be treated and we are already in conversations with a hospital where we can get cyberknife treatment.

But, if the real tendency is to create more brain mets, although it would seem in a relatively slow manner, what options do exist to prevent that? Chemo hasn't helped, as we expected, so we may really need to try Tarceva as soon as possible and see whether we are able to stop new brain lesions from coming out.
The other option would be WBR (instead of or after cyberknife), but considering the possible consequences, can we keep it for later?

catdander
Reply To: Moving forward

Hi watu, I wanted to say hello and hope you are doing well, taking care of yourself and hope your father is alright.

I had one thought when reading your latest post. There is so much negative written about wbr online mainly because people tend to write more often when go wrong than when they go smoothly. There are many people here on Grace who are doing well several years out after wbr. Cyberknife may be an option later if there were one or so few mets pop up later.

That's just 2 cents from someone who's done lots of reading on Grace.

All best hopes for you and your dad,
Janine

catdander
Reply To: Moving forward

I wanted to add this post, http://cancergrace.org/forums/index.php?topic=11055.0
Dr. Weiss states, Pulsed-dose tarceva is also being tried, with less data thus far, for other conditions. It's being tried for regular brain mets and for patients with prior responsiveness to tarceva who are now resistant. These avenues of investigation are worthwhile, but pulsed-dose tarceva has not been proven for either of these situations."

Dr West
Reply To: Moving forward

I agree with Janine that the perils of WBR are largely overstated, and that WBR is the only intervention that has evidence that it reduces the risk of further brain metastases. Chemo might help, Tarceva might help, but WBR is the treatment that has actually been shown to significantly reduce the risk of future brain metastases.

Good luck with whatever approach you choose.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Moving forward

I would have liked to come back to write here with a clearer picture of the situation, but I'm afraid that might take a few weeks more, so I've decided to write a few lines anyway and share with you at least what we know that has happened during the last 3 months.

After the 5th cycle of Taxotere in March, dad went through a very challenging period with a number of debilitating problems that forced him to spend quite a lot of time in bed. We weren’t sure really that his condition was necessarily a consequence of the chemo. He tolerated Taxotere quite well until then and we couldn’t understand how those side effects could come out all together after the 5th dose. The response had been relatively good, with only his brain mets, as expected, not getting any significant benefit. We also thought that his dizziness, weakness, aphasia, etc.. could potentially be more associated with the brain mets (3mm, 6mm and 7mm), rather than being side effects of Taxotere.

At the beginning of May, we took arrangements for Cyber Knife and started a re-challenge with Tarceva, after being 6 months off from Iressa.
So far, we still haven’t been able to get a new CT/MRI as Tarceva seems to be seriously affecting his renal parameters (we had to cancel the CyberK treatment too), but I’m happy to say that after only 1 week on Tarceva his physical condition has incredibly improved. Since May, he is now living a relatively normal life and, until we are able to perform the CT/MRI to clarify the situation, we are assuming that Tarceva is probably having a good response in his brain. I believe that shouldn’t be that unusual for an EGFR+ patient.

Last week, he reduced Tarceva to 150mg every other day and his renal parameters seem to be improving.
Our objective now is to achieve acceptable figures for his creatinine level, so that the radiologists can perform a CT scan with relatively low risk for his kidney.

I will keep you posted and I really hope Tarceva will keep him fit for some time...

Dr West
Reply To: Moving forward

I'm glad to learn he's doing better recently. I hope your subsequent updates note that he continues to improve with time and ongoing treatment.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Moving forward

So happy to read that your Dad is doing better. . .and I hope that he continues to improve.

All my best,
Laya

watu
Reply To: Moving forward

Thank you Dr. West and Laya. Hopefully in September we shall be able to perfom the CT scan and have a clearer picture of the situation.

Dr. West: I found your recent post on Afatinib extremely interesting and I'm looking forward to the next "chapter" in which you will review its potential in EGFR+ patients with acquired resistance to other EGFR inhibitors. That's potentially our next option for when Tarceva will be no longer effective.

I was actually wondering whether, in my dad's specific case, it may also make sense to go back to Taxotere, considering that the previous treatment (5 cycles) was relatively effective (at least, outside the head) and was stopped "only" because it happened to be no longer tolerated. Is it a good choice to go back to a chemo drug that might still be effective if the cancer has never really progressed on it?

And if what is really happening now is a successful re-challange with an EGFR TKI, possibly due to a re-sensitization after the acquired resistance, can that happen again after a new period off from it?
Is this what is usually called "sequential therapy" or "switch maintenance"?

Just some thoughts...

Dr West
Reply To: Moving forward

Sequential therapy really describes moving from treatment to treatment to treatment over time -- nothing more specific than that. Switch maintenance generally refers only to switching from first line chemo to a maintenance therapy that is different, in a patient who hasn't demonstrated progression on first line chemo.

I'll get to the afatinib update soon. As to responses with re-challenge, I haven't seen or heard of any patient responding more than a second time around, but this really hasn't ever been studied, so it's not to say that it couldn't ever happen.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education