Best wishes and thoughts to everyone going through this festive season managing OC.
Looking for some direction as my wife and I just seem to be hitting wall after wall with her current condition and treatment.
Journey so far:
Diagnosed stage 3 c last Sept
Carbo platin and Taxol for 4 cycles (12 weeks) which included a spell in hospital with UTI and blood transfusion with a few neutrophil boosting injections due to blood counts
This was followed by full hysterectomy + 4xlymph node removal with several other areas of tissue removal. A further two cycles (six weeks) chemo. Scan after surgery showed NED but CA125 at 43, continual bloods showed CA125 slowly rising to 56 and PET scan in Sep 2021 showed three areas of tumour growth including METS to liver.
2nd line carbo and caeylx every 4 weeks for 3 sessions, major issues with blood counts and another transfusion and bone marrow stimulant injections to get through 2nd and 3rd cycles which were delayed due to low white, red and neutrophil count. CA125 dropped slightly to 51.
PET scan last week showed limited response and new growth, so classed as platinum sensitive.
This also prevented Icon9 olaparib trial acceptance and also second trial rejection for olaparib as they have classed these new growths as a third occurrence.
Oncologist also recommended stopping chemo to give body a break and see if bloods recover.
But what’s next??
It seems that the onc is wanting a break to get some ‘quality of life’ as the outcome won’t change and the OC is now classed as incurable.
Seems like we are fast running out of options, waiting on integrated doctor to try COC and have been major change of diet to low GI, non dairy, low sugar vegan diet, with multiple supplements (20+ a day)
London COC won’t treat as bloods as currently so low, they want to see 3 samples of good blood counts before setting up appointment.
Diet change was six months ago so I’m more than a little concerned it’s not changing anything with the disease.
We are in Australia and it seems the PARP route is very limited with the prognosis so far, especially with BRCA -ve and now platinum resistance.
It does seem very concerning at the moment that the options are becoming more and more limited.
Anyone gone through a similar experience and can shine a light for us??
Thank you for taking the time to read this and any thoughts are appreciated.
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Lamets
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Hi, I'm not in the right mental space to go into too much detail at moment but mine slightly similar. Currently on weekly taxol- has this been considered an option? Sending love and hope xxx
In the UK your wife would probably be offered a PARP inhibitor, despite being BRCA negative. She'd be assumed to be so called wild type.
Has she tried Avastin? I can understand your oncologist's attitude and it is possibly true that a break of 4 weeks or so will not make a huge difference in outcome. However I would tell her or him that you are anxious to find an effective treatment.
I wonder about your diet, specifically if it's affecting your wife's blood counts. A vegan diet is extreme, and it's generally considered better to get nutrients from foods rather than supplements. A diet consisting of lots of vegetables and fruit along with oily fish, chicken, and occasional organic meat might be better. The dairy-free diet has been shown not to help women with ovarian cancer. I ate organic food only, after a brief flirtation with dairy free.
Having said that, some women including me find supplements helpful.
Another simple thing that may help is to take an anti-inflammatory such as ibuprofen, along with omeprazole to keep the stomach healthy.
I hope this gives you some ideas. Going to COC ASAP may well be worthwhile.
We did try early on after front line treatment with carbo/taxol and the debulking surgery. We were looking to access an inhibitor while in remission as it seems only to be available after a recurrence in Australia.
The second opinion from a professor at the Icon Cancer Centre said he would be giving the same treatment and that the type of cancer presented itself like throwing a handful of rice into your abdomen and is very tricking to treat full stop and that we were lucky to be at the point of No evidence of disease (NED) following the front line treatment.
Remission only lasted 6 months and second line is now showing as platinum resistant.
We can only place our trust in the medical team who are managing the treatment and surgical options unless we can find another avenue to go down.
Hi, sounds like I’m quite similar. I am HGSOC stage 4 b (nodules on pleura) Diagnosed in March this year. BRCA HR neg. I had 4 carboplatin / taxol , major debulk then 2 more chemos. Unfortunately I am platinum resistant so after a short break (6weeks) this month I’ve started weekly taxol & every 2 weeks bevacizumab (avastin) for 18weeks. I’ve had problems with neutrophils all year. I’m going to try either Datar Cancer Genetics or Foundation one - hoping it might help my oncologist with next step. I’m following a protocol which involves a strict but nutritious diet, multiple supplements and exercise. This isn’t for everyone but I feel pretty good on it. Also check out Face Book page: always hope cancer protocol. Best of luck.
We have had the RGCC (Sometimes referred to as the ‘Greek Test’)
Which gave some pointers but it’s a lot of money and you need someone with a bit of skill to interpret we went through a naturopath. Our oncologist doesn’t see any genomic link to ovarian cancer to help cure or slow down although she does think some other cancer types can benefit from the genomic testing results.
We did discuss weekly taxol but she doesn’t see this as an option due to the fact that it was used during the first line treatment and mentioned gemcitabine and topotecan as future options.
When we mentioned Avastin this was dismissed pretty quickly as she doesn’t believe there is any real evidence of a strong response??
Anyway it now looks like naparib followed by either gem or top will be the regimen unless we can find some other option in the meantime.
You trust the medical team unconditionally and that they are doing all they can and providing what they deem to be the best treatment.
We can only keep digging through other options - we have heard of HBOT, IV vitC, we are working through Jane mclellands metro map with diet and supplements (36 different types a day at last count) and trying to access the COC off label drugs together with CBD oil.
A whole lot of work but as of yet the little bugger keeps coming,
Finger crossed for everyone and thanks for taking the time and effort to reply,
Hi Steve, it is frustrating - I’d love to find an integrated oncologist who believes in tackling all the pathways to my cancer growth. Interesting what your oncologist says about taxol and avastin. One reason why I want to do the testing (maybe a waste of money) - I really don’t like the unknown nature of whether a drug will work or not…. After 18+ weeks of weekly treatment I’ll be pretty pee’d off if it doesn’t make a difference. Best of luck to you guys. C
Hi I'm really sorry to hear your news, I'm in exactly the same situation I had caelyx/carbo for 3 months and was in Hospital 3 times for various problems blood transfusions ascites drains bowel blockage and urine infection. To say caelyx did more harm than good would be putting it mildly. I ended up with CA125 higher than when I was first diagnosed and feeling extremely ill and I'm platinum resistant so I didn't get the parp either . I had a 4 week break and I am now on weekly taxol which is working and if that goes well I will be going on a Clinical Trial called Prompt. There is light at the end of the tunnel and the next thing will surely work. All the very best to you and a very Happy Healthy New Year. Sue xx
It does sound like the last few months have been very similar to what my wife has gone through. I hope that the issues are now behind you and you’ve had no impact following your break.
Can I ask when you started the weekly taxol regimen and how long you will be treated prior to switching to the PROMPT trial?
Also are you finding the weeklybtaxol
leas impactful to blood counts than the carboplatin and caeylx?
I have looked up the trial and emailed the contact address to see availability in Australia.
Fingers crossed
Please let me know how you go with the new treatment.
Hi Steve, I've been on weekly Taxol since October and will be having a 3 monthly scan tomorrow. It is definitely working because I don't have ascites now. I still have problems with Hemoglobin but I think this is left over from the Caelyx/Carbo treatment as I was on Taxol/Carbo for front line with no blood issues and I am on a low dose now. Hope this helps Sue
Hi Steve & Joanne, I see my onc on Tuesday. I suffered from 'Scanxiety' the day after my scan but I've put that behind me now and am just hoping for good news on Tuesday 🤞 I'll let you know. Thanks for getting back.
Hi Steve and Joanne, I saw my oncologist today and the scan showed that my ascites had built up again since the last scan so I won't be able to go for the trial at the moment. She offered me a drain but I declined as I have been drained a few times and feel it is not bad enough at the moment so I am continuing with the weekly Taxol for a couple of months to see how it goes. My CA125 had dropped last month to 37 from 84 the month before so that was good but I don't have the results for this month.
It’s good news your marker has dropped, we’ve never been close to normal with the lowest being 40 before surgery.
After surgery it went up to 56 and has never gone below 51.
Not so great about ascites, but I am sure that I have read in other forums that weekly taxol is effective on ascites by reducing the fluid load. So we will be sending positive thoughts to you through your weekly treatments.
It can become a bit restrictive to your routine when you have oncologist, blood test, infusion, scan, specialist …… repeat every week.
We hope you are still getting some sort of ‘normal’ time with friends and family - whatever that is for you.
We see oncologist next week for treatment options update which will depend on how Joannes blood counts have recovered since the lows of two weeks ago.
Thank you so much for your positive vibes. Good luck with your blood results. Unfortunately due to Covid I tend to stay home as much as possible but the numbers are coming down now so hopefully things will get back to 'normal'. Sue
Really sorry to hear that. Have you put yourself forward for Clinical Trials, I decided to do it early on but this will be the first I get on if I'm accepted. All the best Sue xx
Sue we were lined up for an olaparib trial but due to new growth coming through the carbo/caelyx she has been classed as having a second recurrence which removes her from the conditions required for the trial (ie only if a positive response is seen from chemo treatment of the first recurrence.
I do not know how to apply for other trials as they seem to only be available through the oncologist and medical team.
Have emailed another trail coordinator directly together with the prompt teams weve also had the ‘unavailable in Australia’ response.
Hi Lamets. I’m in UK, HGSOC 3c. I am on a PARP after frontline chemo and debulking and I `also have mistletoe injections, usually 3 times per week, self administered. I’m doing well so far, dont know which or what is helping the most, or possibly the combo. I’m BRCA negative but have somatic BRCA from tissue sample. Has your wife had her tissue sampled: that is the reason I got the PARP. If you have access in Australia to what the 4 COC off label drugs are and can access all or some of them independently, would you consider doing that?
I also pray, but know thats maybe not for everyone. I hope you find what works for your wife, best wishes.
Hi, Rose. Glad to hear you are doing well. I’m HGSOV stage 4. I plan to add mistletoe injections and/or infusions to my monthly 2nd line carbo/Doxil (Caelyx). I am wondering how long you have done the mistletoe injections and how this process has gone for you so far. I have awful stomach pain for several days after chemo and hope mistletoe will help with this. Have you noticed any improvement with chemo side effects since you started mistletoe therapy?Hope you continue to do well and thanks for your post.
Dear Sashay2020I only learned of mistletoe after chemo so taking it during the maintenance period alongside a PARP. I cant say what it is doing, if anything, but I am well. I started on 1mg and am now on 100mg injections. I have been using mistletoe now for 8 months. Its regarded as homeopathic rather than mainstream and is a private prescription, not NHS, at least in my case. Good luck, it has no contraindications with other drugs that I’m aware of.
Thank you so much for responding. I think it is considered a botanical in the US. It is not FDA approved here. I have only been able to find a pharmacy that carries American sourced mistletoe. I have not found any studies on that. The European mistletoe has been used and studied in Germany for many years. It appears to have a good safety profile so I am comfortable with trying that. I will probably have to go next door to Canada for infusions. Johns Hopkins, a well-known and respected medical facility here in the US has conducted a small trial primarily for safety and to determine the maximum dose that can be tolerated. No results have been published yet. Thanks again
We are trying to chase down the COC drugs and have three of them at the moment. Dypridamole is now unavailable in Australia and we are trying to find a source or an alternative. We are currently substituting low dose aspirin and berberine, which we think does about half of what dypridamole does.
We haven’t looked into mistletoe although we do have a lot of natural supplements which my wife is accessing through a naturopath.
I also hope we stumble across something which will give an extended respite to all
of the family, it’s been a very tough 12 months so far with not many highs and a lot of lows.
Hi Lamets,Have read your wife’s incredible story & I am going down a different route with OC but 6 months ago after 18xcarbo platin chemos, I was deemed platinum resistant but hormone sensitive, am also BRCA negative. Started the Breast Cancer drug Letrozole in May & still on it !!! Originally 2018 was OC stage 3. My CA 125 is still 69, has never gone very low. Guess we’re all different but thought this route may be of interest.?
I too have been on COC for 2 years but reduced it completely for now as have other complications connected with kidneys. Onwards we go, never give up & take it a day at a time. Buona fortuna, Iside X
Hi Lamets, am not sure how Hormone Sensitivity is assessed? I do know I am way past the age of menopause & assumed my hormones had diminished. However the Oncologist told me I was Hormone Sensitive & was put on Breast Cancer Drug Letrozole even though I have Ovarian Cancer!!!! Have had recently a TIA (heart probs) am being tested & taking a blood thinner daily which means have had to stop Protocol via COC , after 2 years. It never ends, now , having kidney probs after tests so waiting for results of another CT scan!!!!I take life a day at a time & never look back. Am happy, do tai chi & walk daily which brightens the day, rest, careful with diet. Have great support from family & friends, & onwards we go. Wishing you and your wife a successful onward journey, I feel it is never the end just keep going & feel positive. Cheers Iside X
Incurable doesn't mean the end. Mine was found late and in spite of 6 rounds of carbo/taxol did not shrink enough to be deemed operable because of spread to lymph nodes. Three hospitals all gave the same opinion. BRCA negative (wild) so on niraparib parp inhibitor (in the UK) since March which seems to be holding everything at bay, fingers crossed. Been inoperable since August 2020 and did not expect to see that Christmas but still here and going strong. Still helping care for my brother, who is brain damaged, and looking after little granddaughters a few days each week, which is wonderful. I tried a keto diet for a short while but suffered with nausea and fatigue and poorer bloods readings. Feel far better on a normal diet but avoid alcohol and refined sugars where possible. I try to eat a healthy balanced diet with lots of vegetables and protein but generally eat whatever I am giving the rest of the family. Being "normal" makes me feel less of a victim of this hellish disease and I do think a more upbeat mindset helps day-to-day. It is not always easy; but a cancer diagnosis can dominate your mind and behaviour if you let it and spoil what time you have left. If you haven't had second and third opinions I would certainly recommend you do. A short break from treatment might be just what your wife needs to get her body back into battle mode. Feed her well, surround her with love (not sympathy or negative feelings) and make her life as much fun as you can. It might well help and certainly will not harm. I wish you both well on this ghastly journey. It is awful I know. Hugs and prayers and all best wishes x
What a wonderful and encouraging response, Cumbrianlass. I was due to have chemo on December 15th, but my bloods were too low. I was worried when my doctor delayed chemo for two weeks. But I believe it worked out for the best. I felt like my old self baking with my daughter for friends and decorating the house for a visit from my sister and her adult granddaughter who drove nine hours to be with my daughter and me. I had become so self-absorbed with myself, the OC and the pain and discomfort of chemo side effects. My family have returned home, I had chemo yesterday as scheduled. But I am still feeling more chipper from my little holiday treatment break. I will take your comments to heart and get back to things I enjoy such as baking and creative writing. Best wishes to you in 2022. 🙏🏽Sashay
You are an inspiration and you make me feel very humble.
Supporting your brother and having the energy to also handle a couple of little princesses is something to aspire to.
Today our oncologist has offered access to niraparib to see how my wife handles it and also how it impacts the new growth we are seeing in the abdomen from the PET scan on 20th Dec.
Our worry is, is it too late if there is already new tumours growing through carbo/caelyx.
Next will be gemcitabine or topotecan slough we are hoping the COC protocol can be accessed and provide some sort of effect before then.
The chemo seems to attack my wife’s bone marrow very hard causing the very low blood counts which she always struggles to recover from every cycle.
Here’s hoping the recovery gives her body another chance for a full frontal assault to knock this disease for six.
Thank you for your story and taking the time to reply.
I am sorry for what your wife is going through. The following is what I wrote in the past in response to a question in the forum. It briefly summarizes the type of clinical trials offered in the US. FYI, I also became platinum-resistant, so I joined a clinical trial, which is working so far. If you have more questions, please let me know.
There are many trials for OC at least in the US. Current focus of many trials is to mobilize your own immune cells to combat the cancer rather than simply giving drug that kills off rapidly dividing tumor cells (along with other normal cells in our body). One type is to use an antibody that targets a protein on your tumor that is also linked to a chemo drug, such as taxol. A trial of this type, Mirvetuximab Soravtansine in phase 3 has been reported to be effective in its mid-report. The other type is to bring your own immune cells to your tumor using an antibody to a tumor protein while engaging your own immune cells. This type of trial is what I am participating in. My hope is that when you engage your own immune cells, it may be less likely that you develop resistance, like many OC patients do to carboplatin. If you ask why our own immune cells do not attack tumors, scientists have discovered that tumors are very clever so that they have a way to block your own immune cells to kill them off.
I am glad to hear that you are accessing a targeted therapy trial.
It seems that the options in the US are more progressed and wide spread than the options we have in Australia.
We are also of the opinion that activating your own immune system somehow will either supplement chemo or be more effective in eradicating or at least inhibiting growth.
We will investigate the options for these here but we haven’t found any as of yet.
We have been told second surgery would be unlikely and the recommendation is to take a break from the second line chemo of carboplatin and Caelyx after three infusions as new growth is now showing on the PET scan.
Our next step is Naraparib with a view to go back on chemo (gemcitabine or topotecan) once the Parp inhibitor starts to weaken.
We are also trying an integrative doctor who supports the care oncology protocol for off label drugs but not sure what will work.
We all keep praying for everyone to seize their own miracle and find some long and extensive respite from this.
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