Trial offered

[Marie101]

Has anyone heard of or been offered to take part in the Mersana trial?

I'd be interested in anyone's thoughts or knowledge please 🙏 x

[Katmal-UK]

Hi. Not heard of it but would say I have been on three trials over the years which have led to me still being here (despite 2 recurrences) for 15 years (in Oct). My original prognosis in Oct 2007 was 2 years so I am very pro trials. Obviously I weigh up the side effects/quality of life but have worked full time through all 3 trials (until I was made redundant last Christmas).Im still on a trial and have been NED 9 years . I wish you well. Kathy x

[Marie101 in reply to Katmal-UK]

Hi Kathy,

Thank you for your reply. I have just finished in a meeting with my consultant and I have agreed to go ahead a nd have the tests needed before I start the trial treatment.

I'm a bit shaken up as she's said that statistically I'm looking at 24 months survival however she added that we are all individuals and that's just the case on paper and everyone is different.

Your positive message came at the right time. Thank you xx

[Katmal-UK in reply to Marie101]

I was told the same (2 years) but your dr is right we are all individuals. Hold that thought. I didn’t believe I would still be here after all this time. Enjoy each day, don’t waste time thinking about statistics, you are not a statistic, you are you xx Big hug, Kathy xx

[Marie101 in reply to Katmal-UK]

Thank you Kathy, you have no idea how much you have helped me today.

Sending a hug to you as well 🤗 xx

[Loorunner in reply to Katmal-UK]

very encouraging post - thank you x

[organicinna in reply to Katmal-UK]

woow, you so inspirational Katmal xx

[Lookingahead]

hi Marie , I have been encouraged by all the replies to your post as I am now awaiting consultation for possible clinical trials.

Can I ask, is this a trial available in the UK as I see Mersana is an American company . Best of luck x x x

[Marie101 in reply to Lookingahead]

Hi, yes it's available in the UK. Thank you, I have to undergo various tests next week to see if I am 100% suitable.

Good luck to you too x

[JustKBO]

Katmal is indeed an inspiration. Go for your trial Marie everyone who takes this step is a pioneer for us all. We are all individuals so be brave be positive we will all be rooting for you. BTW where are you being treated?

[Marie101 in reply to JustKBO]

Thank you. I'm being treated at Mount Vernon in Northwood. They are amazing! X

[soyoon]

I am in the US, and have been on Mersana trial for the last 2 months. This is an ADC, antibody-drug-conjugate, therapy, targeting sodium dependent phosphate transporter which is apparently highly expressed among tumors. The antibody to the transporter binds the transporter, and upon binding, the ADC gets taken inside the tumor cell, wherein the drug will be released to kill tumors. Mersana's report says that a few people observed tumor shrink completely, and some also saw a different degree of shrinkage including those with progression. The effect on your tumor is observable after 2 or 3 infusion, so you would know fast whether it is working. I will have my CT results today, so I can't tell you if it is working in my case, but my bowel movement returned to normal after the first infusion, so I assume there is some shrinkage.

The drug is, however, very toxic to me. IT turns out I have had the worst cases of side effects among the group for the trial at my hospital, but nausea and fatigue are long lasting up to 4 weeks after infusion. I suffered from muscle pain which prevented me from moving around for a week. THey do offer dose reduction if my CT shows efficacy, but this is no fun. I can tell you after my CT results are released, since that is the real test.

[Summergold2 in reply to soyoon]

I am so sorry you have suffered the toxicity of this. I am hoping the CT scan is very positive. Please do let us know as I am going through second reoccurrence in 2 1/2 years. Tried Olaparib didn't work now on Cisplatin and Gemzar. I am non braca plain HGS no mutations I don't have any other medical issues and am wondering if this might be an option if this last round doesn't work..............

[Marie101 in reply to soyoon]

Thank you for all the detailed information. I'm sorry to hear that you've had such extreme side affects.

Hopefully it will have all been worth it. Please let us know how you get on with your CT scan. Take care xx

[Sunset9 in reply to Marie101]

thank you for your reply. I could not get logged in for some reason for a few days, but now I can. My CT showed a reduction to 5.5/5.5 from 7.1/5.9, along with necrotic area within the tumor mass! So, it is reducing tumor only after two infusion, continues to be killing off cancer cells. So, I recommend the Mersana trial a try, if you are running out of options. It is also called XMT-1536. There are 148 trial sites world wide, including Australia, Europe including UK.

[Sunset9 in reply to Sunset9]

please note that I had to get a new log-in ID due to previous trouble, but sunset9 is so Yoon.

[Summergold2 in reply to Sunset9]

I am so glad that it is working that is awesome news. I think I recall you also are HGS non braca non mutations. I found one trial is being recruited at UC Irvine if the CisplatinGemzar doesn't work. Question for you have you been diagnosed or had low sodium counts during your cancer? I have only had low sodium levels with my cancer and was told by my Oncologist to add more to my diet so I am wondering if this could be an indicator????

Debbie from Calif

[Sunset9 in reply to Summergold2]

not with cancer but with treatments. Low sodium apparently contributes to fatigue, so to alleviate it, I get saline infusion once a week with Mersana trial. I am told to keep up my electrolytes in general, so I try to eat avocado for potassium, and take pills for magnesium and so forth. And, try to eat lots of greens.

[Summergold2 in reply to Sunset9]

I am hoping your success will continue and that the tumors will DIE! Thank you for participating in this trial and for tolerating the awful side effects this drug is having on you .....................................

Sending strength Debbie

[Marie101 in reply to Sunset9]

That's fantastic news, I'm so pleased for you.

I'm hoping to start next week providing the tests I'm having show that I'm suitable for the trial.

I hope the side affects are starting to disappear or improve.

Thank you for all your information and feedback xx

[Sunset9 in reply to Marie101]

I hope it works for you much better with limited side effects. I am told my experience with side effects was very unusual, anyway.

[Marie101 in reply to Sunset9]

hi So Yoon,

I've just been told that I have been accepted onto the Mersana trial and I start next week.

I hope you are feeling better and that the side affects have eased a little.

May I ask if you have lost your hair, the trial nurses here are unsure if that will happen?

Sending you 💓 xx

[Sunset9 in reply to Marie101]

I am so glad to hear that you are accepted, too. There is no hair loss, so don't worry. I hope side effects are not so bad for you; I was an unusual case, I was told. Now, I have had 3 infusions, and symptoms are definitely more tolerable, although they lowered the dose from 36 to 30 for the 3rd infusion. No muscle ache. A difficult side-effect for me to deal with now is continuous nausea. I am on around the clock Ondansetron (Zofran), and I have to have multiple meals in small quantities as well.

I don't know if I told you that CT results after the two infusions showed a significant reduction in tumor size (5.5/5.5 from 7.1/5.9), and CA125 was plummeted from >1500 to 40! So, all this is tolerable.

[Marie101 in reply to Sunset9]

Thank you. I'm so pleased for you that the results are so positive and that thankfully your side affects are reducing. You are so right that it's worth the side affects if the results are good.

I will let you know how it goes.

Take care and have a good weekend xx

[JustKBO]

so sorry to hear of your awful experience but Marie NB Soyoon does have the worst reported case of side effects you may get none. I am on Rucaparib and have precious little side effects whereas some people can’t tolerate it. We are all different. X

[Sw21]

I’m in the U.S. and have a friend in the Uplift trial by Mersana. She has only had 1 treatment so far. The first 2 weeks after treatment were hard for her. But the treatment does look to have a better response rate that other chemo options she had left. She is in 2nd recurrence. Best wishes to you!

Stephanie

[Marie101 in reply to Sw21]

Hi Stephanie, thank you for the information about your friend. I hope her side affects have eased off. Please may I ask what made the 2 weeks so hard for her? Best wishes x

[Sw21 in reply to Marie101]

Sure, she has fatigue, weakness, diarrhea and muscle aches for the first 2 weeks. Has not landed in the hospital or anything like that. As was said, we are all different in our bodies reactions, you may do better. 💕

[Marie101 in reply to Sw21]

Thank you again for letting me know and getting in touch xx