I did not have a good visit at RM today. After 3 cycles of carbo/caelyx my chemo has been stopped as it is not working and the reason being is I have mixed low and high grade cells and this combination is hard to treat. I've been sent away till next week when my histology and scans can be discussed. This is not good news. I'm BRCA negative and now platinum insensitive. Does anyone else have mixed cells and can advise me.
Mixed low and high grade cells: I did not have a... - My Ovacome
I’m sorry your news wasn’t good but they will discuss and come up with a plan. There must be other ladies in the same boat or similar. I’m allergic to carbo so can’t have that again.
Please don’t worry. They will find a treatment for you. Hugs. Xxxxx
Im just numb. Fed up getting positive and bring knocked back. It's all in peritoneon again. Thank you x
I get knocked down but I get up again. Remember that song. That’s what we deal with. Highs and lows. It does get wearing.
Keep positive. It will be ok. Xxxxxxx
Oh babe so sorry to hear this. Surely there is something else? Your in good hands at the RM. hope someone replies with some suggestions. Xxx
Thank you. I have felt so well until two weeks ago when I started constant tummy pain. I knew something was wrong. I've never had any symptoms before now ever since diagnosis. I will pull myself back. Annoyed I've never been told mixed cells before just high grade
How do they now now you are mixed grade? Is this a 2nd opinion? Have you had a new biopsy?
I’m platinum resistant BRCA negative and it’s certainly a challenge with these features.
I’m certain they will come up with a plan, presuming they’ve discussed any current trials you may be eligible for? Xx
Apparently I always have been from original biopsy. I can only think RM are better at reading them than my first hospital. That said my histology is missing and that's why I have a week before I get a new plan. I've been trying to find my histology today. I think its at my surgery hospital and not diagnosis hospital. I was asked to chase to add weight to the urgency!!
I also had mixed histology. Are they serous and Clear cell, all serous or another combination. Are you P53 positive?
Yes, like Jessica D-B has said, how do they know or have they had another look at your original reports / tumour samples. Once you have a new plan, you should start to feel better. It’s strange it hasn’t been mentioned before.
All the best, Gleedy
So sorry to hear this. I don't have mixed cells, but am 3C high grade BRCA negative platinum resistant and understand just how you feel. I had disease progression through GemCarbo in July/August 2017 and weekly taxol in December 2017, but I've only had minor symptoms and I'm well. My current options are the Forward1 Trial at Preston if I'm suitable (biopsy currently being assessed) or the Rotterdam regime at the Christie.
Thank you. I've had my cry. A big cry actually. Onwards now
Argh! Not what you wanted You know you're in good hands at the RM, but second opinions are available elsewhere, and there are good choices in and around London. I'm so sorry your chemo has been stopped though, but maybe this extra week will give you the chance to re-focus. No experience of mixed cells, so I can't help you there, but I'm sending you a big, squishy virtual hug.
sorry that just went without I being able to stop it. I am sorry your chemo has stopped, could you ring the Ovacome helpline for advice. I do hope you can get a plan or a second opinion might also help. hugs
I’ve no experience of what you are going through, but just want to send you my love and best wishes.
Same. Love & best wishes ❣️
So sorry you had this unexpected news and stopped chemo . I am sure RM will have a plan in place soon , you are in good hands but must have been such a shock to hear .
Sending you a big hug . Hang on in there you will soon be back on track . Love and best wishes Kim x 💜
Such a shock. For the first time I've felt I have no hope. It's a horrible feeling. A plan will help x
I felt exactly like this after my 3rd line chemo was stopped in early January - it is awful. The word I used was 'scuppered'. It made me face up to some of the big realities of the disease and was probably a phase I had to go through, however horrible it was. I was also worn down by the number of hospital appointments a(12 this month, as I had 5 lots of radiotherapy on a lymph node) and miles on the road. But on the up now. Each day I try to do something nice and be very kind to myself. I have options - there are options - and I now feel stronger about going on. I think it's particularly hard when this happens at the start of a year, when normally you are looking ahead and making plans. I felt as if I was falling off the edge of January...
All the best for your new plan. x
Aww thank you. Yes I'm well and truly scuppered. I always say if I don't have hope I have nothing and that is so not true. I will get my head around it and soldier on. I think we have to do the horrible bit first. X
Yes, I think there's no denying you have to ride out the bumps and you learn from them. After my 12 days of hospital appointments and 700 miles on the road this month I went for a sunny walk on Friday and recognised this was nurturing me more than the hospitals and I was quite at peace with what might happen. It made me feel not so trapped. Now I'm ready to deal with what treatment is on offer while accepting it's not curable. If you want info on the Forward1 trial message me your email address.
Tracey I’m so sorry you had this news today. There was a trial posted on site earlier for platinum resistant. Will dig it out and send it through. Maybe of interest.
There WILL be a plan for you. Push it on because you’re already feeling vulnerable and delays will only make that worse.
Massive hugs xoxo
Thank you so much. I feel worse this morning than yesterday. I think my biggest hurdle at the moment is finding my original and op histology. I rang yesterday and will again today. Thank you so much for the link. I need to get out of this soon and gloom mood. Xx
Sometimes we need the doom and gloom to work through to be able to let it out. There's nothing wrong with feeling a tad sorry for ourselves. We do have one of the deadliest diseases on the planet. It's not good to suppress the feeling of anger, fear, why me? etc. As you know, I almost did something very silly as life became unbearable. So glad that I didn't but it taught me a big lesson which was don't ever think that life is not worth living, no matter what shit hole I'm in at that moment. I wish you every good thing that I can that things will get better for you and in the meantime you are allowed to cry, scream and shout as much as you want until it does. And it will sweetheart. xxx
Him so glad you have brill news right now. Just embrace it. Thank you x
Hi Tracy, sorry to hear your appointment, Your a positive person, you can beat this! I know it's easy said than done but I know you will be fine. We are all here to support each other. Hugs & kisses. Xxxxx😘
Hi there Gleedy, That is very interesting that you were told that you only had high grade cells originally. I shall ask my Oncologist that ? when I go next time. Sometimes I think that they maybe think we do not need to know these things,but it is important. I cannot help you regarding the treatment but as Suzanne said there is sure to be something they can suggest. Do let us know how you get on. Take care.xxx
Hi. Sorry you are having such a beastly time right now. There’s nothing helpful I can add so just want to send you a hug and my very best wishes 🌺🌼🌸🌻🌹🌺🌼🌸🌻🌹 Jo
I am so sorry this is happening to you, although I have no experience of mixed cells, I just wish you all the best and hope they come up with a plan for you soon,
Thank you Carole. I hope you are well x
If chemo doesn't work for you, as in my case, it does at least open the door to clinical trials that are only available to those who have failed at conventional treatment. Well worth looking in to phase one trials.
Thank you. At least I'm at RM and I'm hoping have a selection of options/trials open to me. They were very kind on Monday. X
Hi Gleedy, I so strongly agree with what Kryssy said! One of the reasons I sought help from this group is because it’s very hard to show my emotions around friends and family. I imagine many here get what I’m saying. I am American and I know there can be differences in protocol but I thought I’d share what I’ve learned about being low grade. Primary Peritoneal is more rare than ovarian, LG more rare than high (about 10% of cases) and mixed grade is about 5% of that 10%. After I received my initial path, I saw I was LG. I tried to find info on internet — nothing (I learned later that it helps if you add “serous”). I asked my gynecological oncologist at my next visit. It was like he didn’t hear me. As I went thru chemo I kept bringing it up and he kept ignoring me. Towards the end of my chemo I found an article about an 8 year study on LG recently finished. It was written by a research doc at MD Anderson (a top cancer hospital in Texas). It quantified the excellent results using hormone blockers plus other info on these LG patients. After chemo was finished, my husband decided to accompany me on the “what’s next visit”. I asked him if he would bring up the study rather than me. Didn’t that (male) doc perk right up when my husband presented it! Male chauvinist _ _ g! At any rate, I ultimately went to see the doc that ran the study at MD Anderson. I asked him why my local gyro/onc didn’t respond to my questions regarding LG. He told me that it’s rare enough that so many docs have never seen it. Generally pathologists get it right but not always. I was found to have a mutated P53 which is associated with HG. Because mistakes happen, Doc at Anderson has genetics and pathologist run gene study and path again. Definitely have LG and definitely P53 mutated. Doc discussed with team. They decided to proceed as LG for treatment for now (estrogen positive so Letrozole) but expect that I may be reclassified as mixed in the future. Bottom line, you’re case is rarer than rare and that’s probably why this is only coming to light now. I hope that helps your frustration. As to sadness and fear, feel what you gotta feel while you’re chasing medical records and waiting for the new plan. I’ll be watching your posts closely and cheering you on! Sorry this was so long
Thank you for replying with so much information. I dont post often I will update . I reply if I can help. X
Sorry to hear that you're having such a testing time, Gleedy. I hope that when you go for your appointment next week, your team can offer you a treatment plan that will give you some hope and some positive results. Don't forget, we're here at COPES. We're meeting in the Macmillan Crntre on Saturday 3rd Feb. There should be a CNS there. There will. Retain,y be loads of support.
Love Wendy xx
Thank you Wendy. I live in Surrey now hence being at RM. I am often in Essex though and as it turns out Southend oncology are a hard act to follow. Maybe I can pop in one day. Hope you are well x
Hello Gleedy - How are you doing? Have they found you a new treatment? I do hope so. I am newly diagnosed and am awaiting biopsy's. My CT scan showed ovarian cysts and peritoneum deposits, so I have been looking at treatments and came across Cytoreduction and HIPEC a heated chemotherapy which is circulated into the peritoneal cavity. Has this been offered to you? Do let us all know how you are getting on.
Well RM gave up on me and referred me to hospice so i sought a second opinion at the christie. I wont lie as i have been very poorly but truly believe my life has been save by the team at the christie. I am havi ing cisplatin and gem. Apart from chemo blurghhhh i feel i am doing well. No scan as yet but i an half the size in the abdomen than i was.
When I was first diagnosed I was told I had some borderline cancer on the surface of the ovaries, some areas of high grade but mostly low grade. However I went for a second opinion and they felt it was unlikely to be high grade and it has always behaved as low grade. I am also a patient at The Christie
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