Good news from ~Anwen Jones today!!: Today I... - My Ovacome

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Good news from ~Anwen Jones today!!

win_56 profile image
34 Replies

Today I bring you important news: an innovative new combination of ovarian cancer drugs is now available to those newly diagnosed with advanced ovarian cancer. Advances in genomic testing mean more women than ever before will be able to access these targeted drugs from their very first treatment.

For the first time two ovarian cancer drugs, olaparib (Lynparza®) and bevacizumab (Avastin®), are now available in combination. This is an exciting step forward in personalised treatments and comes hot on the heels of the announcement about niraparib in January.

Who will be able to access these drugs?

Anyone who:

has advanced (stage III or IV) ovarian cancer, and

has responded well to first-line platinum chemotherapy given alongside bevacizumab, and

through new genomic testing, their tumour tested positive for homologous recombination deficiency (HRD)

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win_56 profile image
win_56
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34 Replies
Litchick profile image
Litchick

Yay this is such good news - more treatment options - and hopefully better outcomes for lots of ladies. 👏👏👏

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hello win_56

Thank you posting the news about this treatment option for people diagnosed with stage 3 or 4 ovarian cancer who test positive for homologous recombination deficiency (HRD).

To expand a little bit on the information that you've already helpfully shared, the National Institute for Health and Care Excellence (NICE) have approved olaparib plus bevacizumab (Avastin) for use within the Cancer Drugs Fund (CDF) today.

This provides a further option for maintenance treatment of stages 3 and 4 high-grade epithelial ovarian (including high grade clear cell and high grade endometrioid), fallopian tube or primary peritoneal cancer which has completely or partially responded to first-line platinum-based chemotherapy plus bevacizumab, and when the cancer is associated with homologous recombination deficiency (HRD). This would include those with a BRCA 1 or BRCA 2 gene alteration.

NICE and the CDF cover decisions for treatment in England and around 1,100 women will now be eligible for this treatment in England. Medicines recommended through NICE technology appraisal are routinely funded for use in NHS Wales. The Department of Health, Social Services and Public Safety (DHSSPS) in Northern Ireland usually follows NICE decisions too.

You can find more information about the decision at:

nice.org.uk/news/article/ov...

You may remember that we posted in the forum before making our submission to NICE, seeking the experiences of anyone who had been treated with either or both of these drugs or had comments on expanding the range of treatments available. We would like to thank everyone who contributed, as using quotes from women who have experienced these treatments is so important, and makes our submission so much stronger.

If you would like further information or if it would help to talk anything through, please get in touch with our Support Service.

Best wishes

Julia

Ovacome Support

Katmal-UK profile image
Katmal-UK in reply to OvacomeSupport

Brilliant news. Years ago I was told further treatments are coming along all the time..... seems that statement was correct.

JustKBO profile image
JustKBO in reply to OvacomeSupport

I’ve been thinking about the maintenance drugs a lot lately and was going to pose this question at my next oncology meeting, but perhaps you could throw some light on it too:

What exactly is the difference between the different Paribs ?

Why am I on Rucaparib and not Olarparib or Niraparib?

Thank you.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to JustKBO

Dear JustKBO,

Thank you for getting in touch with your question.

Olaparib, niraparib and rucaparib are targeted therapies and all work in a similar way by targeting the DNA of cancer cells but not healthy cells. This differs from standard chemotherapy which is a systemic therapy because it affects all the cells in the body. All three drugs are PARP inhibitors which means they affect a protein called Poly ADP-ribose polymerase. This protein helps damaged cancer cells to repair themselves and PARP inhibitors stop this process. The ‘-ib’ at the end of their names shows that they are inhibitors.

Olaparib (Lynparaza) is used to treat advanced cancer after chemotherapy has been tried. At present olaparib is routinely available on the NHS as a maintenance treatment for women who have BRCA1 or BRCA2 gene alteration if they have had three courses of platinum chemotherapy. If you have the BRCA gene alteration it is available through the Cancer Drugs Fund after your first course of chemotherapy. As the discussion above shows, it is also available now through the Cancer Drugs Fund in combination with bevacizumab (Avastin) for those with the BRCA gene alteration or those with homologous recombination deficiency (HRD).

Niraparib (Zejula) is used as a maintenance treatment for women with relapsed platinum-sensitive high grade serous epithelial ovarian, fallopian tube and peritoneal cancer, with or without the BRCA gene change. At present niraparib is available in England through the Cancer Drugs Fund for women with platinum-sensitive, high-grade serous epithelial ovarian, fallopian tube or primary peritoneal cancer that has responded to the most recent course of platinum-based chemotherapy, whether this is for newly diagnosed ovarian cancer or relapsed disease.

Rucaparib (Rubraca) is available through the Cancer Drugs Fund for women in England with relapsed, high-grade epithelial ovarian, fallopian tube or primary peritoneal cancer that has responded to platinum-based chemotherapy, with and without a BRCA alteration. In Scotland it is available for those without the BRCA alteration.

Your oncologist will have looked at the eligibility criteria for prescribing each drug. In addition, each of the PARP inhibitors have different side effects and drug interactions, so your doctor will consider your own personal medical history and any other medication you are taking to decide which PARP inhibitor is safest and most likely to be effective in your individual circumstances. If the PARP treatment is effective but the side effects are intolerable, a different PARP may be tried to see if it is better tolerated. If PARP treatment isn’t effective, then currently a different PARP isn’t usually tried, although there are clinical trials looking at whether trying PARP treatment again would be effective.

I hope this information is helpful to you but please do come back if we can help in any other way, or give us a call on 0800 008 7054 or 07503 682311, Monday – Friday, 10am – 5pm.

Best wishes,

Laura Nott

Support Services

JustKBO profile image
JustKBO in reply to OvacomeSupport

Dear Laura thank you for that very thorough and informative explanation. I understand much better now. Kind regards Maria.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to JustKBO

Dear JustKBO,

Thank you for getting in touch with your question.

Olaparib, niraparib and rucaparib are targeted therapies and all work in a similar way by targeting the DNA of cancer cells but not healthy cells. This differs from standard chemotherapy which is a systemic therapy because it affects all the cells in the body. All three drugs are PARP inhibitors which means they affect a protein called Poly ADP-ribose polymerase. This protein helps damaged cancer cells to repair themselves and PARP inhibitors stop this process. The ‘-ib’ at the end of their names shows that they are inhibitors.

Olaparib (Lynparaza) is used to treat advanced cancer after chemotherapy has been tried. At present olaparib is routinely available on the NHS as a maintenance treatment for women who have BRCA1 or BRCA2 gene alteration if they have had three courses of platinum chemotherapy. If you have the BRCA gene alteration it is available through the Cancer Drugs Fund after your first course of chemotherapy. As the discussion above shows, it is also available now through the Cancer Drugs Fund in combination with bevacizumab (Avastin) for those with the BRCA gene alteration or those with homologous recombination deficiency (HRD).

Niraparib (Zejula) is used as a maintenance treatment for women with relapsed platinum-sensitive high grade serous epithelial ovarian, fallopian tube and peritoneal cancer, with or without the BRCA gene change. At present niraparib is available in England through the Cancer Drugs Fund for women with platinum-sensitive, high-grade serous epithelial ovarian, fallopian tube or primary peritoneal cancer that has responded to the most recent course of platinum-based chemotherapy, whether this is for newly diagnosed ovarian cancer or relapsed disease.

Rucaparib (Rubraca) is available through the Cancer Drugs Fund for women in England with relapsed, high-grade epithelial ovarian, fallopian tube or primary peritoneal cancer that has responded to platinum-based chemotherapy, with and without a BRCA alteration. In Scotland it is available for those without the BRCA alteration.

Your oncologist will have looked at the eligibility criteria for prescribing each drug. In addition, each of the PARP inhibitors have different side effects and drug interactions, so your doctor will consider your own personal medical history and any other medication you are taking to decide which PARP inhibitor is safest and most likely to be effective in your individual circumstances. If the PARP treatment is effective but the side effects are intolerable, a different PARP may be tried to see if it is better tolerated. If PARP treatment isn’t effective, then currently a different PARP isn’t usually tried, although there are clinical trials looking at whether trying PARP treatment again would be effective.

I hope this information is helpful to you but please do come back if we can help in any other way, or give us a call on 0800 008 7054 or 07503 682311, Monday – Friday, 10am – 5pm.

Best wishes,

Laura Nott

Support Services

N-A-58 profile image
N-A-58

I’m not sure if I’m reading this right. This treatment is only available to those with brca 1&2 abs hrd gene?

Katmal-UK profile image
Katmal-UK in reply to N-A-58

Hi I read it as to include those with BRAC1 and 2 note solely for them?

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to N-A-58

Hello N-A-58

Thank you for your comment. The treatment is available to those with BRCA1, BRCA 2 or other HRD gene alterations.

Please get in touch with us if you would like more information or have any queries.

Best wishes

Julia

Davonian profile image
Davonian in reply to OvacomeSupport

Hi Julia

This is great news! Another positive step.

How do you get tested for HRD gene alteration?

Best wishes, Jaki

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to Davonian

Hi Jackie

Thank you for your reply. Your team will be able to advise you as to whether HRD testing would be helpful for you, so you can ask them if you would like to explore this option.

Best wishes

Julia

N-A-58 profile image
N-A-58 in reply to OvacomeSupport

I’m glad treatments are improving but I read that it’s a v small percentage of ladies that have brca1/2, like 10% so I’m struggling as to why they aren’t investigating treatments to help the remaining 90% also!

delia2 profile image
delia2 in reply to N-A-58

I think around 40% have HRD

N-A-58 profile image
N-A-58 in reply to delia2

I’m glad to hear the treatment is available and potentially beneficial to more ladies but I don’t know why research isn’t into those without any of those genes. Or the low grades like mentioned below. It needs more money and then hopefully one day all women are given a real chance against this awful disease.

delia2 profile image
delia2 in reply to N-A-58

I agree. I’m afraid it’s all about the numbers but as treatment becomes more individualized there should be more attention to rarer forms of OC. I do know there’s a lot of attention to the genetic profiles of different types of OC and hopefully that will lead to drug trials.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to N-A-58

Dear N-A-58,

Thank you for your reply. There are many clinical trials investigating treatment for people without BRCA gene alterations or HRD. You can find more information about clinical trials here ovacome.org.uk/clinical-trials

Posts below have also mentioned low grade ovarian cancer - here is some good news about results from a clinical trial called FRAME which reports “In the FRAME study, additional patients with recurrent LGSOC have now responded to treatment with clinically meaningful results for patients with KRAS wild-type tumors, which represents approximately 70% of all LGSOC patients" investor.verastem.com/news-... They are now studying this further in a trial called RAMP 201.

I hope it is reassuring to you and other forum users to know that there is a lot of ongoing research into a wide range of tumour types. If you are interested in taking part in any clinical trials you can talk to your oncology team about what options might be available to you.

Best wishes,

Laura Nott

Support Services

win_56 profile image
win_56

Thank you Julia - wonderful news. A big thank you to all fighting our cause

Artgreen profile image
Artgreen

Fantastic news . Shame it’s not for low graders too. I wonder how many peoples tumours are tested for HRD. Is that something that’s done for all newly diagnosed people?

thomas62 profile image
thomas62 in reply to Artgreen

Hi artgreen, Yes, the more treatment options ladies have is really positive. I don't believe low graders have HRD. Hope you keeping well. Gwen

win_56 profile image
win_56

My tumor was testing but did not have the brca mutation, so i won't qualify, but so happy for the patients that do. I hope in the future there are more treatment options for non HRD and non brca patients, but research is on-going so fingers crossed

RainbowC profile image
RainbowC

Same! My BRCA test was negative, and I don’t know about HRD - that’s not something I’ve heard of before. But it’s definitely great news for anyone it does apply to.

thomas62 profile image
thomas62

Hi Ovacome Support,

Great news for many ladies with ovarian cancer giving more treatment options and, therefore greater survival. However, from what I know none of the new treatment options are relevant to us ladies with low grade ovarian cancer. For all us ladies the world over I would like to know when there will be a new treatment option for us? Whilst we wait our low grade cancer friends are dying including a dear friend of mine.

Mumsie13 profile image
Mumsie13 in reply to thomas62

This is very good news and I am truly excited for those ladies who fit the criteria. However, like you I am wondering what future treatment options will be coming along for the rest of us ladies. I was diagnosed with stage 3 carcinosarcoma OC. I have had two lots of carboplatin which still works on the cancer but now causes problems with side effects. I have been told my treatment options are now limited if not non existent. I am brca neg but my returned tumour has not been HRD tested as far as I am aware. I am also told that I do not fit the criteria for parps and NHS would not fund treatment. I finished carboplatin late November 2020. CT scans have shown a good response and my ca125 has still been falling (166 down to 61) two weeks ago. I am not on any treatment, just watch and wait. I was told right after surgery that doctors did not know very much about my type of cancer and could not say how things might progress. By all accounts the prognosis was not very good. I was ned for two years before first recurrence. During the follow-up after my treatment for recurrence the doctor said there had been an excellent partial response to the carboplatin despite the nasty side effects and in the next breath asked if I wanted to watch and wait and be kept comfortable. I was shocked as I had not expected them to throw the towel in at this point. I have done much better than anyone thought. I am not feeling sorry for myself; I suppose I am a little angry. I am feeling so well and positive about things but now it seems they have given up on me. I don't know what I am trying to say really. I think this news just struck a chord. I really am pleased for people who can have these new drugs, I just hoped there might be better news for the rest of us. Anyway, I am not giving up yet. Another followup next Monday and I am determined to discuss any and every treatment option and hope for a better response this time maybe go for a second opinion. My thoughts are with all you lovely ladies. Jackie 🤗.

delia2 profile image
delia2 in reply to Mumsie13

Hi. It sounds like you’ve done really well so far and you need another oncologist! Definitely get another opinion. I would Google for top experts in carcinosarcoma and possibly consult long distance. I know getting a second opinion at a top US center is not that expensive.

thomas62 profile image
thomas62 in reply to Mumsie13

Hi Jackie, I agree with what you say in that the good news for certain ladies with ovarian cancer struck a cord with yourself - I felt the same - I would never decry any good news for ladies with ovarian cancer as, compared to say breast cancer, we're all at the bottom of the pile with regards to funding for research/treatments and awareness. We are thankful for charities such as Health Unlocked/Ovacome that are doing such good work on all our behalf. Nevertheless, those of us with the rarer types of ovarian cancer feel a strong need for more funding/research/treatments to be made on our behalf - to feel more included rather than excluded!! Good Luck Jackie - don't give up and go for a second opinion if you deem it necessary. Gwen x

thomas62 profile image
thomas62 in reply to Mumsie13

Hi Jackie and all, For information:I've just picked up on an Ovacome E-mail. Dr.Marcia Hall,Consultant Medical Oncologist is presenting Research Update on Rare Ovarian Cancers. On 6th April 6-7pm evening. Need to register on Ovacome site. Gwen

Mumsie13 profile image
Mumsie13 in reply to thomas62

Booked it tonight. Hope I can get some answers.

thomas62 profile image
thomas62 in reply to Mumsie13

Me too Jackie. Gwen x

Jacky5 profile image
Jacky5

Hi winI had been watching the link on the nice website for that report. It was supposed to be out at the end of last year I think .

I was given bevacizumab during first line treatment so I was interested. I would have had it as maintenance but was found to be brca 2 so was given Olaparib . It was shortly after Olaparib was made available to women after first line treatment rather than only after relapse.

I didnt know about HRD testing but from a quick google it seems it's a marker that shows a person will potentially gain greater benefit from Olaparib and testing will become routine.

It's great news that more women will be able to benefit from Olaparib not just those that are brca positive.

Availability seems to gradually being opened up to more and more of us.

Thanks very much for the info.

All the best to you.

Liz.x

win_56 profile image
win_56 in reply to Jacky5

You too Liz

mrstadpole profile image
mrstadpole

I was interviewed on BBC World news yesterday morning as well as Sky news this am with DR Susanna Banjoree. I also did an interview on radio Gloucester yesterday .I was so pleased to be asked to do this and to spread awareness of Ovarian cancer and the drugs Olaparib and Avastin..Ann

Jacky5 profile image
Jacky5 in reply to mrstadpole

Well done you!.

Ruebacelle profile image
Ruebacelle

Available in which countries? I know usa uses it...

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