Good evening everyone, hope you all have had a good day, or a better one. Just wondering if any of you may be on the Ramp 201 trial, or Frame. I feel I should start researching what could be worth considering as an option for me, since it seems progression to be happening based on my last three CA-125 results. My oncologist briefly mentioned starting me on Tremetinib, which is worrying me because of its known side-effects that he had actually described as 'awful' when I had asked about it during our first meeting. That was in January 2022 when I was debating whether or not to have chemotherapy, with high risk of it being resisted in cases of low grade serous ovarian cancer. At that time, Tremetenib was only just being given to women with ovarian cancer due to the need to offer it as an alternative to chemotherapy in order to keep patients out of hospital during the Covid pandemic when possible. Hence, why I'm anxious about taking it, and need to have as much information about other treatment options and the associated side-effects. As, when I was feeling so well post-surgery in Jan 22, I feel great now apart from unrelated pain from polymyalgia rheumatica daily, so I dread having to start on further therapies that could change my life drastically. Any advice would be really appreciated, should any of you be on those trials or taken Tremetinib. It looks as though I wasn't the 1 in 15 whose LGSOC did not resist the Carboplatin-Paklotaxol . 😩😥
Ramp 201 Trial : Good evening everyone, hope you... - My Ovacome
Ramp 201 Trial
Hello jsc50, I am not in a position to give you any advice about Tremetinib or other treatments for low grade but I do think that getting as much information as possible is a good idea. If no one on here can help maybe ring Anna at the Ovacome helpline? Or you could ask your oncologist to refer you for a second opinion?
Side effects are different for each person, so I wouldn’t just accept his/her word for it… most doctors haven’t taken the drugs they give to us so how would he know?!
Best of luck with whatever you decide to do xx
Arr, thank you for your advice Lindy. I have had some useful advice from another member concerning Tremetinib; it doesn't seem to have been widely used thus far though. As my appointment is tomorrow, I have been researching it further this afternoon so I have enough facts ready in case the subject is raised again then. There is also another matter of concern to my oncologist ...and ME that he was more concentrated upon during the last appointment. That being (in his words): "a strange lesion in the lung pleura". First and foremost I expect to be told about the plan of action regarding that, which I know must be a biopsy initially. My mind has been swirling over the past few days wondering what the result from it might be. I briefly spoke about it at a recent Zoom meeting, and Anna as I recall was going to post information on requesting a second opinion, and also the Ramp 201 trial, which could be worth enquiring about should I have no histology of another kind that would exclude me as a potential candidate. I doubt I'll sleep much tonight... Jan
Good morning Jan
Just sharing some information mentioned in your reply which I hope may be useful:
- ovacome.org.uk/getting-a-se... - Here is Ovacome's information booklet about getting a second opinion.
- clinicaltrials.gov/ct2/show... and ramp201study.com/ - These links provide further information about the RAMP201 trial if you were seeking more information to discuss with your oncologist.
- ovacome.org.uk/clinical-tri... - We also have some further information about clinical trials which may be of interest.
- cancerresearchuk.org/about-... - In addition, Cancer Research UK have a range of information resources about clinical trials.
I hope this is useful and your appointment today goes smoothly and provides some clarity. Please don't hesitate to get in touch if there's any further information we can provide or anything we may be able to support with. You can send us a message here on the forum, call us on 0800 008 7054 or send us an email via support@ovacome.org.uk.
Best wishes
Annie (colleague of Anna) - Ovacome Support
Thank you so much for kindly sending on to me those details. I shall certainly be enquiring about the RAMP 201 trial. Feeling quite anxious now. Leaving in an hour for my appointment. I only managed 3 hours sleep from 5 until 8 am last night. I'll let you know later how this afternoon progressed ... hopefully better ... 🙏
Hi Jan
No problem at all, I hope the information is useful. I'm sorry to hear you are feeling so anxious and have had difficulty sleeping. If you would like to talk through anything that's on your mind, please don't hesitate to get in touch. We're here to support you.
Wishing you all the very best for your appointment today.
Take care
Annie - Ovacome Support
Hi Anna/Annie/LyndyFollowing on from the oncology appointment I attended last Thursday, first thank you for sending on your good wishes. The appointment was at 3.40 pm, but typically it was at least a further hour before eventually a registrar appeared. Standing in the doorway, without introducing himself his first words directed at me were literally: "How did you find chemotherapy?". This took me completely by surprise, having been left to ponder on the outcome of what the consultant had proposed to discuss at the MDT meeting the week after the previous appointment. That was concerning an appropriate procedure for a biopsy of a node-like lesion in the lung pleura. I spent many hours over the next two weeks researching the options presumed possible, and was well prepared for discussing those further. I had not, however, expected a further course of chemotherapy to be offered. I asked him why was he suggesting a course of Carboplatin, when only 11 months ago I had completed my primary course of Carboplatin and Paclotaxol. He answered, saying that one can have a recurrence at any time. I accepted that, but asked how a course of only Carboplatin might work if already after 6 cycles of Carbo-taxol there were signs of progression. He answered that the "node" on the pleura was only 22mm..." so tiny", he said. Furthermore, he said that it could have already reduced in size from the previous course of chemotherapy. I then asked if it was cancerous, and he said it could be "calcified". At that point, I asked what the scan report had noted. He proceeded to read out loud the report. Shockingly, this confirmed another node in the abdomen. This was not mentioned to me by the consultant whom had seen me previously. The node is apparently in the peritoneum (or presumably a part that was not excised during debulking back in November 2021. He appeared keen to get the conversation diverted back to chemotherapy, but both myself and my husband had more questions. The registrar wasn't able to answer them, suggesting that he arranged a telephone appointment with the consultant oncologist (this Friday), because he didn't know what had happened before he met with me today.
We left for home feeling disappointed, that the appointment had been a waste of time. Concluding that the registrar was left to hurriedly get through appointments without suffiently being prepped beforehand.
My husband had struggled to understand him due to his stilted pronounciation. My medical secretarial skills came in handy! Certainly, without more clarity about undergoing more chemotherapy, and the consequential affects should further surgery be deemed necessary. Would I be as fit then, as I am now to withstand it; could my current situation have worsened by that time if the cancer had actually resisted chemotherapy. Perhaps also, by then, I would not fit with the criteria for inclusion into the RAMP 201 trial. Leaving only Trimetinib as an option...
I am still no wiser on the criteria on Avastin. It is only given as part of primary treatment, I understand so probably I wouldn't be given it having already completed primary treatment.
May be a referral to Dr Banerjee at RMH might be worth requesting for a second opinion before starting chemo?
Scared of making a wrong move... Just recently bought hair products, now every chance I won't be needing them again...
Consultant Oncologist calling me late afternoon on Friday. Chemo first, or a 2nd opinion first ... My mind's constantly swirling.
Any advice you are able to offer, I'll appreciate.
Thanking you in anticipation.
Yours sincerely
Janet
Hello Janet
Thank you for your reply. I'm sorry to hear you've had information that has left your mind swirling. I can see from further along the replies that the follow-up call suggested letrozole and you will have a face-face appointment to discuss this further next week,
If it would help to talk things through and plan for your appointment then please do get in touch with us. We could arrange a videocall with you at a convenient time or we can always speak over the phone. We'd also be very happy to send you any further information that you feel might be helpful at the moment.
You can direct message us through this forum, call us on 0800 008 7054 Monday-Friday 10am-5pm or send us an email via support@ovacome.org.uk. Please don't hesitate to let us know anything that would be useful for you and we'll be very happy to help.
Best wishes
Anna
Ovacome Support
Hi Anna - thank you for getting back in touch. Yes, I would like to talk through with you how best to approach relevant matters of real concern to me when seeing the consultant next Thursday. Tomorrow Tuesday or Wednesday afternoon would be possible for me, if you could let me know a convenient time to call you.
I thought today the consultant was going to call me, but again it was left for his registrar to convey a message on his behalf about starting me on Letrozole without explanation.
I'll await to hear from you as to when would be a convenient time to call you. Text me, if you prefer.
Yours sincerely,
Janet
Hi Janet
Thank you for your reply. Please do get in touch any time next week that is convenient for you. You can call the supportline on 0800 008 7054 Monday-Friday 10am-5pm. Any of the support team will be very happy to talk things through with you.
You can also call me on my direct line 07586 247 310. On Tuesday morning I'll be facilitating a group but I'll be available after 1pm, or any time on Wednesday.
If we don't answer straightaway we'll be on another call but please do leave a message and we'll always call you back.
Best wishes
Anna
Thank you Anna; I'll call you on Tuesday afternoon directly on the mobile number you have given me.
Hope you have an enjoyable few days off.
Best Wishes
Janet
Thank you Janet, I'll look forward to speaking with you then.
Hope you have a lovely bank holiday weekend too!
Best wishes
Anna
Hi Anna, Annie and Lyndy
Just to thank you again for the help and support you offered me last week. Finally, I conversed with my oncologist last Thursday and together we agreed it would be best to watch and wait for the next three months. The lesion (node) being currently 22 mm, rounded rather than spiculated when likely to be cancerous. A follow-up CT scan and then a face to face appointment in September is the plan. Hopefully, by then there will have been some shrinkage. Keeping my fingers crossed it was as a result of two nasty respiratory infections earlier this year, and nothing more sinister.
Have a lovely day.
Yours sincerely
Janet
Hi Janet
Thank you so much for your message and the update. It's good to hear you have had a conversation with your oncologist and have agreed on the best way forward with your care for the next few months. I hope that this has provided some reassurance and that your upcoming CT scan and appointment in September go smoothly. Please don't hesitate to send us a message or give us a call on 0800 008 7054 if there's anything you would like to talk through or anything we can support you with. We're here Monday - Friday, 10am - 5pm.
Best wishes
Annie - Ovacome Support
I will; it's so good to have you all around.
I have low grade serous ovarian cancer and was on tremetanib for almost 2 years. The side effects were manageable. In my case, I had pleural effusion and it continued but I had a pretty normal life.
I stopped taking the tremetanib to enroll in the 201 trial. During the month that I stopped the drug, the cancer got into my lungs. I decided to quit the trial and I am doing carbo/taxol weekly now.
Alex thank you so much for sharing with me your experience. Any time shortly, my oncologist is telephoning me so your message is going to be very helpful. Carboplatin has been offered, as secondary therapy to Carbo/taxol I completed 11/12 ago. Did you need any prophylaxis while taking Tremetinib?
I read that one would be excluded from RAMP 201 if having had Tremitinib, so I'm surprised that you had been taking it before going on RAMP 201. I was thinking perhaps to try RAMP before considering Trimetinib; however, based on what you discovered I'll have to see what my oncologist feels about it.
the only issue I had with tremetanib was the skin of my nose. The doctor reduced the dose and I didn't have any problems after that. I only used a topical antibiotic.
They accepted me for the RAMP 201 trial after being on tremetanib for 2 years. I think it is a good idea to try the trial first if it is safe for you to stop all medication for one month which is necessary to join the trial.
Hope this answers your questions
Oh so glad to have you message me back so soon (still awaiting the call). I am on prescribed men's for other conditions not associated with my low grade serous ovarian cancers. Hopefully, it won't affect my qualifying for RAMP201.
I am aware of the risk of hair loss or hirsutism while on Tremetinib. My hair is only now long enough to style since the end of the last chemo. Presumably it hasn't affected you in that way. I hope not.
MEDs not Mens!Now suggested Letrozole. Last week suggested chemotherapy. Doc couldn't explain why change in treatment plan; going to have face to face appointment with consultant next Thursday. Asked about referral for 2nd opinion. Told it can take some time... How long did you wait for referral re RAMP201 trial?
Good-evening Alex, Hope you have had a good weekend. It's so kind of you to spare me some time to explain further your treatment pathways. I'm not sure myself about whether or not to opt for Letrozole as opposed to another course of chemotherapy. Either/or I am aware of the low level of resistance to both in LGSOC at just 15% and 14%. As I only finished the strongest chemotherapy combo available to me last June, I would only feel willing going on Carboplatin should there have been a better chance of lesser resistance. Likewise, with hormone therapy in the form of Letrozole. The lesion in my lung pleura is only 22mm apparently. May be it might be worth trying Tremitinib - the drug my oncologist touched on initially. Now I know from you that one could be considered for RAMP201, having already had Tremitinib. You say that you have found the side-effects manageable, which is reassuring though thinning hair and skin problems I'm dreading... I keep reminding myself how well I coped with chemo, and at least this wouldn't mean 3-weekly trips to hospital on a drip for hours.
I'll be talking all this through with Anna tomorrow, to be prepared for the telephonic appointment with my oncologist on Thursday.
I really appreciate all the help and support I've had from you, and others via this forum. I would be totally lost without it.
I'll keep you posted.
Best regards
Jan
Dear Alex
Thank you so much for all your support recently; it has been so helpful in that I was able to adequately reach a decision on further planning. My oncologist and I are in agreement that we should watch and wait for 3 months, to see how the lesion in my lung pleura behaves. This shall be followed up in September with the results of another CT scan. Keeping my fingers crossed for good news then. It is round, rather than spiculated and currently less than 30mm in size. Hoping two nasty respiratory infections could be the cause and nothing sinister in which case it should be shrinking.
I hope for you similarly good news will come.
Best Wishes
Jan
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