Somatuline LP 60 - 1246167

fortmyr
Posts:128

Hello everyone,

A friend of my brother-in-law, who has lung cancer with bone metastases, is on a clinical trial in France where he is treated with Somatuline LP 60.

Apparently, Somatuline LP 60 would slow down the effect of growth hormones and, therefore, of metastases. It would also have next to no side effects. I was wondering if you know anything about Somatuline LP 60 and if it sounds promising?

Thank you so much for your help,

Myriam

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Reply # - July 31, 2012, 10:05 AM

catdander
Posts:

Hi Myriam, Well I vote for yes, staves off metastases with little to no side effects. How is he doing and how long has he been on the trial?

I'll reach out to one of our faculty for input.

Hope you and sis and the rest are ok,
Janine

Reply # - July 31, 2012, 10:45 AM

certain spring
Posts: 762

Most of the trials for this drug (also called lanreotide) seem to be for a condition called acromegaly, caused by excess growth hormone.The cancer-related trials listed on clinicaltrials.gov are for neuroendocrine tumours and carcinoids, which makes sense as these are hormone-related cancers. However I can't work out which one your brother-in-law's friend might be on.
This is slightly off the point but do you remember Dr Pinder writing about trials for a new drug called GRN1005?
http://cancergrace.org/forums/index.php/topic,3784.msg93678.html#msg936…
I notice that the phase 2 trial she mentioned has sites at Dana Farber in Boston and also in Detroit. (Dr Pinder is the investigator for the trial at her hospital in Florida.) Your sister I think is in Montreal? A long way from Boston I know, but just a thought. Details at http://www.clinicaltrials.gov/ct2/show/NCT01497665.

Reply # - July 31, 2012, 10:54 AM

fortmyr
Posts: 128

Janine, thanks for your answer and for checking with Faculty. Unfortunately I don't have other details as my brother-in-law has not had the chance yet to talk to this person (I rthink it's his mother who told him about this friend of his - she lives in France). However, he's leaving for France next week and we may have more info once he's there.

CS: I also did a quick search on the internet and found something similar to what you wrote, which is why I was looking forward to hearing from Faculty about this. As for my sister, she lives in Gatineau (about a 2-hour ride from Montreal), so it would be a long travel for her to go to Detroit or Boston for treatment (she did meet with Dr. Sequist once but it would not be a small thing to get treatment in any of these places).

Myriam

Reply # - July 31, 2012, 12:23 PM

catdander
Posts:

The first onc I requested comment from had no information on the drug. We should hear from Dr. J Weiss today whether or not he has info on the drug. I also added the name lanreotide cs offered to the request. It must be quite a new idea.

Reply # - July 31, 2012, 12:55 PM

certain spring
Posts: 762

Myriam, sorry to go on about this, but didn't Dr Pinder mention a possible site at McGill for the GRN1005 trial? In your exchange she named a Dr Hirsh as the principal investigator. That was in January, so could this still be in the pipeline? The drug is given every three weeks.
Final thought: it looks as if there are two hospitals in Ontario (in Sunnybrook and London) trialling GRN 1005 in the context of breast cancer. Might it be possible to get the drug on a compassionate use basis under the Canadian system?
I'll shut up now - I know you are asking about a completely different drug! It's just that Dr Pinder was quite enthused about her trial, and about GRN 1005.

Reply # - July 31, 2012, 06:26 PM

Dr West
Posts: 4735

Sorry to say that I am not familiar with this agent. There are many, many novel therapies in clinical trials -- really too many for anyone to keep track of the range of them all over the planet.

-Dr. West

Reply # - July 31, 2012, 08:31 PM

fortmyr
Posts: 128

Thank you for your help everyone.

CS: GRN1005 is not available yet at McGill (at least it was not the last time I looked at the clinical trial site), but thanks for following up on this.

Myriam

Reply # - August 1, 2012, 02:03 AM

certain spring
Posts: 762

I wonder if it is worth writing to Geron or ringing Dr Hirsh's secretary? Drs West and Weiss often comment on how much bureaucracy is involved in setting up a trial, so perhaps there has been a delay.
Janine, thank you for the suggestion. If Dr Pinder is available I would certainly love to hear from her - she is missed! - and it might be helpful to Myriam's sister. I am interested in the GRN 1005 trial myself as I am likely to be facing the same problems sooner or later.

Reply # - August 1, 2012, 07:25 AM

catdander
Posts:

I would certainly call the facility where the trial is set to start. I've noted on the clinicaltrials.gov have lagged in posting sites that have opened for patients.

I've contacted Dr. Pinder so we should hear from her. Anytime certain spring just ask. We want to have the doctors available but too want to make it doable for them. So instead of the doctors scanning the site for input opportunities, Jim and I send requests to them.

Reply # - August 1, 2012, 08:06 AM

fortmyr
Posts: 128

Dear CS and Janine, thank you for your constant support. It is really endearing to see how much help we get from the GRACE community. As for my sister, don't worry, I am constantly scanning medical opportunities for her and GRN-1005 was still on my horizon. However, my sister has indicated to me that she is not interested in doing chemo anymore, which is why I did not push for this one. However, given that she will likely have to drop Afatinib definitively (the rashes are simply too bad, and increasing with time), she may be opened to trying something new. I will certainly mention GRN-1005 when we cross that bridge but, obviously, she makes the choices. Nevertheless, if Dr. Pinder has some new insights that she could share with us I will gladly read it!

Regarding Somatuline (LP 60), I wrote to my brother-in-law who clarified something for me. His friend (76 years old), is getting LP60 by prescription, not through a clinical trial. So I was wondering if this is something that is done only in France (and may be also only by the oncologist of this specific patient) or if the GRACE doctors are also aware of some of their colleagues who would have done it in the US (or elsewhere)?

Thanks again to everyone who've chimed in,

Myriam

Reply # - August 1, 2012, 08:24 AM

mpinder
Posts: 42

Dear Myriam,

I believe that the GRN1005 trial is now open in Canada - I will contact Geron and Dr. Hirsh to confirm. Is your sister still on Afatinib?

Although the growth hormone/insulin-like growth factor (IGF) axis (which under normal conditions tells cells to grow) has been implicated in a number of cancers, I would not be inclined to prescribe this drug off-label for one of my patients. Drugs targeting IGF have not proven effective in lung cancer, in spite of some promising early studies.

Sending my best wishes to you and your sister,
Dr. Pinder

Reply # - August 1, 2012, 09:01 AM

catdander
Posts:

Myriam, Neither of the 2 doctors asked have heard of LP60 used in lung cancer.

I didn't hear back from Dr. J Weiss. Which never happens. So I'm a little concerned my email didn't forward to him.

BTW, the reason I'm saying Dr. J Weiss is that there is now a Dr. G Weiss who will be contributing to Grace! He is a nsclc specialist researching "novel agents". He emailed back yesterday that he'd not heard of the drug.

Dr. Pinder, thanks for the valuable input.

Reply # - August 1, 2012, 09:29 AM

fortmyr
Posts: 128

Dr. Pinder, thank you so much for your response. I'll let my sister know about your views on LP60. I will also let her know about the GRN 1005 trial now being opened in Canada - it is so kind of you to follow up on this!

Janine, thank you so much for following up with everyone!

My sister has been off of Afatinib for a week now as the rashes were too terrible (she has rashes on each and every part of her body, including her face, and at the peak, the rashes were really painful). We are in San Francisco at the moment (myself, my husband, my daughter, my sister and her two daughters). She's leaving this Saturday to go back home. My husband, my daughter and I are still around for another week (back on August 11).

I'll suggest her to contact Dr. Hirsch as soon as she comes back as her brain mets were active recently (she had serious convulsions in her right arm that lasted more than 2 days just before joining us on the trip), Given the potential of GRN 1005 to control for brain mets she may be more interested in taking it now. Do you have any information regarding the side effects of GRN 1005 by any chance?

Again thank you so much for all your help,

Myriam

Reply # - August 1, 2012, 09:41 AM

certain spring
Posts: 762

Great to hear from Dr Pinder - we miss her! Janine, thank you for making it happen.
Myriam, I am sorry to hear your sister will probably have to stop the afatinib. These rashes sound awful - several other people have reported finding them very hard to bear.
On the side effects, back in January Dr Pinder mentioned that the phase I trial of GRN1005 showed that neuropathy was a potential problem, occuring in 20 per cent of patients:
http://cancergrace.org/forums/index.php/topic,3784.msg93678.html#msg936….

Reply # - August 1, 2012, 10:04 AM

mpinder
Posts: 42

Thanks for the shout-out, certainspring! It is always good to be here. GRN1005 consists of paclitaxel (Taxol) linked to a compound that allows the chemotherapy to cross the blood-brain barrier. The side effects are pretty typical of what we see with Taxol (fatigue, changes in blood counts and neuropathy).

Myriam, I will let you know when I hear back from Canada regarding whether the trial is definitely open.

All my best,
Dr. Pinder

Reply # - August 1, 2012, 11:29 AM

fortmyr
Posts: 128

Thank you again Dr. Pinder, and I agree 100% with CS, it's great to have you back :)

Myriam

Reply # - August 1, 2012, 11:38 AM

mpinder
Posts: 42

I just received confirmation from Dr. Hirsh herself that the trial has just opened there. Good luck, Myriam! Please keep us posted on your sister.

Dr. Pinder

Reply # - August 1, 2012, 05:26 PM

dr. weiss
Posts: 206

I'm sorry that it's taken me a few days to respond. A few of my patients are very active, there's been a lot of movement on my trials (good things), and I'm getting married in 5 weeks, so I'm a tad behind. Apparently, somatuline is a somatostatin analogue. I realize that this may not mean much to many, but Dr. West and Dr. Pinder will recognize this as a class of drugs used to treat carcinoid tumors and severe diarrhea. I would not utilize this drug off trial to treat NSCLC other than perhaps pulmonary carcinoid. I would consider it in a clinic trial, especially if it were given with an agent known to be active or to patients with slow growing cancers. I don't have experience with the agent, but if it's like sandostatin (the somatostatin analogue that I do have experience with) I would expect side effects to be minimal.

I know Glen Weiss from print. He was first author on a paper that I greatly admire. He did a retrospective subgroup analysis of elderly patients on Nasser Hanna's trial that compared docetaxel to pemetrexed in the second line. His results showed similar survival and similar toxicity between younger and older patients. This was important work because it is some of the best data that we have that the fit elderly should be treated just like younger patients in the 2nd line. His work is one of the inspirations behind my prospective 2nd line study of abraxane for elderly patients. I'm happy to hear that he's going to be on GRACE.

I'm also thrilled to see Dr. Pinder again on GRACE. One of my favorite parts of GRACE is learning from others, and in the past, I learned a lot from her posts.

Reply # - August 1, 2012, 09:32 PM

fortmyr
Posts: 128

Dr. Pinder, thank you so much for checking with Dr. Hirsch. We will try to find her phone number and phone her from here.

Dr. Weiss, a million thanks for commenting on Somatuline, this is very helpful. Also, congratulations for the upcoming wedding!!!

Myriam

Reply # - August 7, 2012, 12:52 PM

Jazz
Posts: 279

Myriam,

Wishing your sister good fortune on the GRN1005 trial. I hope she gets in and it works well and is tolerable.

I imagine your schedule in SF is incredibly full (I was just there last week) - I hope you're having fun and are blessed with fine weather. Did you go to Muir Woods? The kids might really enjoy the Exploratorium, which is by the Palace of Fine Arts (gorgeous at night). If you belong to an Auto Club, you should be able to get a discount on just about everything in the City. Great food abounds :wink:

Have a great time, carpe diem!

Jazz

Reply # - August 7, 2012, 12:55 PM

Jazz
Posts: 279

BTW, I think Wednesdays are free (maybe just the 1st Wednesday?) at the Exploratorium.

Reply # - August 7, 2012, 07:41 PM

fortmyr
Posts: 128

Jazz, thank you for your kind words. My sister is trying to get Cetuximab on top of the Afatinib that she's already getting through a compassion program. If it does not work then she'll contact Dr. Hirsh (for the GRN 1005 trial).

San Francisco is terrific (with its wonderful architecture and varied neighborhoods). We're having a wonderful time. We did go to Muir Woods (beautiful huge trees) and did the promenade around the Palace of fine arts (right where the Exploratorium is located). I love California!

Take care,

Myriam

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