Update [May 2026]: Since this page was published, the National Institute for Health and Care Excellence (NICE) has confirmed NHS funding for Mirvetuximab Soravtansine (Mirv) in England. You can read our coverage of the announcement here.
We are incredibly grateful to everyone from the Ovacome Community who responded to our survey: 'Have your say on availability of a treatment for patients with platinum resistance' between 19 December 2025 and 16 January 2026.
145 people responded, giving invaluable insight into the impact of chemotherapy side effects and helping policy makers to understand patient views on access to treatment options when people become platinum resistant.
"It is so hard to balance hope with the reality of limited options and efficacy. Platinum resistant patients need optimism and hope.
At the moment there is only emotional overwhelm and fear. It is crucial to expand options to improve outcomes for patients with platinum-resistant disease!" (Participant in the survey)
Our call for change
Ovacome and our community would like to see greater investment in and availability of treatments and trials for ovarian cancer, particularly at the later stages of the disease. There are a number of treatments available internationally and we would like these to also be made available within the UK for our community. The impact of platinum resistance is wide reaching, many people are anxious about hearing these words from their clinician. We understand from both the patient and clinical community that greater availability of treatments would make a positive difference to how the disease is viewed by many and would give comfort and hope to many people affected by the disease. It is important that new treatments and trials are made available if we are to start to improve the lives of all those affected by ovarian cancer. England performs poorly in ovarian cancer outcomes compared to most European countries. If treatments are not funded on the NHS we will see the gap continue to widen.
Key focuses
The National Institute for clinical excellence (NICE) are considering whether the NHS should fund some treatments for those with platinum resistant disease at the moment. Ovacome attends NICE meetings to represent the views of people affected by ovarian cancer.
In this survey we wanted to ensure that your views and experiences were given to policy makers and NICE, specifically on:
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The impact of chemotherapy on people’s quality of life. Chemotherapy is often still offered when people become platinum resistant. This is included below.
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The impact of Mirvetuximab Soravtansine on people’s quality of life. Mirvetuximab Soravtansine is a new treatment that is effective for some people when they become platinum resistant. NICE are considering whether this treatment can be funded by NHS England. This is included below.
The feedback gathered from our community has focused mainly on:
- The day to day and long-term side effects of chemotherapy and their severity
- The views expressed by members of our community as to the availability of treatments for ovarian cancer at the later stages of disease, specifically platinum resistance.
- Their opinions as to availability of treatments at point of platinum resistance, specifically relating to Mirvetuximab Soravtansine.
89%
Experienced some level of pain or discomfort as a result of chemotherapy
84%
Experienced some level of anixety or depression as a result of chemotherapy
93%
Felt that chemotherapy side effects impacted them doing the things that are important them
Key findings
Because Mirvetuximab Soravtansine has not been widely available to this community, few people are able to directly compare its side effects with chemotherapy. However, feedback from this survey and our broader community indicates that both the treatment frequency of Mirvetuximab Soravtansine (every 3 weeks versus often weekly for chemotherapy) and the side effect profile are viewed favourably by many of those who have had the opportunity to use it.
A significant majority of responses noted that side effects were both fewer and more manageable than those associated with chemotherapy. This is especially important at this stage of disease as many people would prefer to prioritise spending time with family and friends and doing things that bring them comfort and happiness.
Effects on mobility
"I am massively fatigued and deconditioned after chemo. I cannot walk for more than 1 minute (timed) without getting breathless with an elevated heart rate up to 130. I have to crawl up the stairs."How people answer this can depend on how much support they have in place. Mobility issues most commonly relate to chemotherapy induced peripheral neuropathy and fatigue. Both of these side effects can endure long after chemotherapy has finished and some people never recover, even partially, from these side effects. Please note that some people experience side effects not only from chemotherapy itself, but also from the medications given to manage its side effects.
No bad effect from chemotherapy: 21.28%
Some effect from chemotherapy: 43.62%
A significant effect from chemotherapy: 35.11%
Effects on self care
Responses here often noted the need to have carers or family members to support them with basic tasks. For some, the side effects of chemotherapy mean that they give up work or have to bring in carers. Even when family members are providing significant levels of personal care, this had an impact on the whole family dynamic, on relationships and on finances.
No bad effect from chemotherapy: 38.30%
Some effect from chemotherapy: 37.23%
A significant effect from chemotherapy: 24.47%
Effects on important activities
(e.g. spending time with others, work, studies, hobbies)
"Normal life is on hold with chemo. I didn't go out much and I couldn't work, exercise or socialize."Just 6.45% reported no bad effect on their everyday lives from Chemotherapy. For some people these effects continued beyond the duration of treatment, resulting in sustained changes to their wellbeing and quality of life. This is often reported to Ovacome as the reason why people choose to stop treatment when they become platinum resistant; the inability to continue life and maintain important relationships mean, as well as frequently reported isolation, mean that the negatives associated with the side effects of chemotherapy come to outweigh the positives of continuing treatment.
No bad effect from chemotherapy: 6.45%
Some effect from chemotherapy: 45.16%
A significant effect from chemotherapy: 48.39%
Effects of pain or discomfort
Responses here often noted the need to have carers or family members to support them with basic tasks. For some, the side effects of chemotherapy mean that they give up work or have to bring in carers. Even when family members are providing significant levels of personal care, this had an impact on the whole family dynamic, on relationships and on finances.
Effects on mental health
(experiences of anxiety and/or depression)
"Low mood which I guess would be like depression. These horrible feelings came out of the blue. I found it took a long time to return to a normal mindset & overcome the feeling of being totally lost. I still have to work hard to stop my mind going down that path again."A high percentage of people reported experiencing anxiety or depression as a result of chemotherapy. For some, this related to the side effects of the treatment, noting that poor mobility, peripheral neuropathy or chemo related fatigue increased isolation. For others, the anxiety or depression is due to fears about lack of treatment options at the point of platinum resistance. Platinum resistance is widely feared in our community due to the limited (or absent) treatment options. The important it is for those with ovarian cancer to see that treatments are becoming available at later stages of the disease cannot be overstated. The term 'Platinum resistance' is a key term identified on our support line that is more likely to lead to callers expressing suicidal ideation and this is reportedly due to the lack of options at that stage and the fear of undergoing chemotherapy again.
No bad effect from chemotherapy: 15.96%
Some effect from chemotherapy: 57.45%
A significant effect from chemotherapy: 26.60%
