Hi ladies, I have been lurking and reading your stories for the last few weeks and in total admiration of your personal battles through this horrible journey.
My story started in October last year when I thought I was suffering from a urine infection, after many delays in not being able to see a doctor and being treated on antibiotics for a suspected gall bladder problem, I crawled to a and e walk-in in centre to be diagnosed with ovarian cancer. I spent three weeks after a drain to remove 14 litres of ascites which caused my blood pressure to crash so many times. A couple of weeks later I’ve had meetings with the cancer team at Weston park hospital in Sheffield and due to start taxol/Carbo the following week. My cns decided I needed to have the fluid drained that had built up again before the chemo. Again back to hospital I warned them not to drain too quickly due to what happened before but no one listened so again an overnight stay turned in to a week, I then developed pneumonia so the first chemo date was cancelled. The antibiotics caused severe d and v so much so that I ended up missing my next chemo date. I lost over three stone, couldn’t eat and truly thought I wasn’t going to get back home from this. The nurses kept telling me this was making me feel so much more I’ll than any chemo would.
Fast forward to first chemo and I’m positive thinking that finally I’m going to kick the cancer rather than treat the symptoms, the nurse starts the taxol drip, 15mls goes in and I went into anaphylactic shock. The chemo is stopped and I’m stabilised after my heart rate goes over 160 bpm so scary. My oncologist decided to start me on just the Carbo a week later, I was pretty stressed as it started going in but luckily I didn’t have any problems and felt relieved that I was kicking it after all this time. My ca125 was over 7000 which was a shock but after the first and second chemo it reduced by a thousand each time so I was positive it was doing something.
I had my third dose of Carbo and a week later noticed that my tummy was starting to fill up again. I went for my ct scan last week and was hoping that everything would be showing something good despite the niggle about the fluid coming back.
I went to see the oncologist yesterday to be told that the Carbo was not working, my next dose due next Monday wouldn’t be going ahead and not only had the cancer not shrunk but it had grown. I was told obviously this has brought my chances of survival down to months rather than years and they have left it to me to decide what to do next. I have been offered caelyx or tamoxifen but told the chances of this working are slim. The way the news was told to me felt like I’m done for already. They are going to drain my tummy again on Monday and have another appointment with the oncologist to tell him my decision on which way to go on Thursday. My cancer when found first off was on one ovary and spread to the omentum and was stage two. I’d had a hysterectomy in 2007 but they left my ovaries in as the surgeon preferred to leave them if they were healthy and due to my age at the time. I’m now 55 and feel totally devastated. I have three beautiful older kids who live with me that are my world. I hate seeing them suffer with me, they are looking after me so well but I feel so cheated knowing I won’t get to see them get married, being a granny etc.
Apologies for the long sad post but I have no one else to talk to and I know you ladies will know the feelings I have. I’m trying to find my big girl pants today. If anyone knows where they are or can give me a kick up the butt I would be so grateful
Diana x
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Hi, please get a second opinion... how do they know the caelyx won’t work if they don’t try , every one is different so it could just work .
Pauline x
As you can see, you are not alone when you have this forum. You also have your three kids. Maybe you could consider telling them how you feel and letting them help you with the process of getting a second opinion. They probably have hidden strengths and could help you more at this difficult time, if they knew what was needed. Other people don’t understand unless you explain clearly to them. Fight on!
I think you need a second opinion. Are you currently seeing a Gynaecology oncologist specialist? If not could one one of your children help you look for the nearest Gynaecology Oncology Specialist centre in your area.
For example I was initially referred to South Shields hospital (my local) but refused and asked to go to Gateshead Queen Elizabeth and to a certain surgeon who headed up that team. (I may gave seen his registrar but would be under him).
This made a huge difference as none on of his team would operate on me because I had two kidneys joined together with a tumour behind them.
If I had just gone with what had been suggested I would have been left with that 3cm tumour. Mr M. got that tumour out and gave me my first remission.
What I’m telling you this for is to demonstrate you have to be bloody pushy. My doctor was not impressed with me but it is our right (under government guidelines) to choose the hospital we want to be treated at.
I’m 52 similar to you and like you I’m not done yet.
You may be too tired to advocate for yourself but You have three children who may be able to help. Or maybe a friend?
I'm from the US so I don't know if the treatments are customarily different. Otherwise, my cancer situation is somewhat similar to yours.
I'm a fairly healthy and thin 60 year old. When I was diagnosed last May with Stage 4C High-Grade Serous Epithelial Ovarian Adenocarcinoma of Mullerian Origin my physical condition was similar to a holocaust victim that was pregnant with twins. I had lost at least 30 lbs that was replaced by malignant ascites. During the first month, I had 27 liters of fluid drained from my abdomen and chest cavity. After each treatment, my lungs & abdomen would painfully contract as if I was in labor because the organs were so displaced. The fluid kept growing back until I started chemo. I also couldn't walk or sit up as I had no strength in my legs due to lymphedema.
After diagnosis, I was under my mother's care. I ate small meals all day long. I tried to eat no salt, no sugar, no gluten, no dairy, no diabetic foods or drinks, no carbonated or sweetened drinks & no alcohol. I carrot juiced 3 times daily, ate many salads, nuts, seeds, avocado's, coconut oil, fish, chicken & Ensure Max protein with Miralax twice daily & non-dairy unsweetened yogurt especially during chemo (use stevia or fruit as sweeteners). I was also taking many vitamin & mineral supplements. (alternative therapy approaches published by many on the internet, including chrisbeatcancer.com)
I was put on neoadjuvant chemo for four 21 day cycles of very high dose Carboplatin, Paclitaxel (taxol) & Bevacizumab (Avastin). During my first chemo, I had many symptoms (pain, breathing, increased heart rate) but the onc would just add more pain killers, steroids you name it to my infusion so that I'd get through the treatment. My 1st chemo was on June 1 and by mid July most of the ascites & lymphedema was gone and I had gained 25 lbs. I sunbathed for at least an hour a day. I was riding my bike every day for 45 minutes and once a week for a 3 hour bike trip. My last chemo was on August 3 and at that time, I hadn't felt so good in at least 10 years. I never had side effects from the chemo other than losing my hair. My CA 125 began at 338 and went down to 7.3. My debulking surgery was delayed (my choice) and in early November I had an exploratory surgery. My surgeon said that she saw a lot of dead (burned out) cancer from the chemo but also evidence of minimal new growth. My CA 125 was 4.3 in November.
As I only had a partial (but very good) response to my first round of chemo, my oncologists are happily surprised at how well I was able to bounce back from near death and also keep the cancer at bay for so long without chemo. I personally feel that my treatments were very successful due to my diet and lifestyle change and also the Avastin (for ascites). My second opinion doctors told me that they would have only put me on 1 cycle of Avastin because the side effect of getting perforations of the bowel is a common and major complication during debulking surgery. I thank God for my first onc's reckless treatment plan! I'm now getting more chemo treatments prior to my upcoming debulking surgery and this new surgeon won't allow me to have Avastin. Only Carboplatin & Docetaxel (taxotere). The reason my oncologist changed my taxane drug was because I might now be resistant to Paclitaxel (I'm surprised your onc didn't put you on carbo & taxotere as carbo is known to be more effective in a combo). I had a biopsy taken during my exploratory and sent to a private tumor testing company for chemo drug sensitivity testing. Paclitaxel showed it had minimal efficacy on my tumor. Some of the drugs that my tumor did show is highly responsive to are chemo drugs for breast cancer. I was also highly responsive to Isotretinoin (Accutane for acne). My oncologist doesn't want to try any of those drugs on me until I go into recurrence or frontline if I'm not responsive.
The advice I have for you is, you need to do everything in your power to find out what drugs are effective on your tumor. You need to get your tumor biopsied and sent for chemo sensitivity testing otherwise you'll be getting treatments in the typical trial & error approach. In the US, the private tumor testing companies aren't FDA approved so I needed to pay out of pocket, but most have financial assistance. There are also genomic tumor testing companies that are FDA approved that most US hospitals use (& insurance pays for). As tumors continually mutate, I will be getting a biopsy of my tumor tested again at one of those companies during my debulking surgery. Hopefully, you already had genomic testing done to identify that you aren't BRCA positive.
You should also get many 2nd opinions until you find the right doc. I feel that Avastin saved my life. They've found out that most chemo drugs are highly effective when taken in combo. Avastin works very well with Carboplatin and Paclitaxel. Avastin is readily prescribed in the US for ascites. Maybe you just needed to have Carbo & Avastin instead of just Carbo alone. Now that they've deemed that you're ineligible for surgery, there shouldn't be any side effect concerns with you trying it.
There is also a US website (inspire.com) that has many medical health communities with thousands of posts already existing. You can also post there to get additional advice.
Everyday I research something about ovarian cancer. At my diagnosis, I just ignorantly subjected myself without question to anything my oncs wanted to do. When I was feeling well enough, I talked to a distant family member who was involved in cancer research for the past 50 years. She mentioned a few new drugs that I probably could benefit from. I felt like an idiot as I didn't have a clue what she was talking about. I then realized that I needed to get all the knowledge I possibly could as only I will be my best advocate.
I just bought the medical textbook, Surgery for Ovarian Cancer Principles and Practice, for $1.99 on Amazon. It was published in 2006 so there may be some info that's changed. What I like about it is in addition to describing what and how the surgeries are performed, it describes in detail the process of determining if certain levels of surgeries should be performed based on a patient's criteria. It may have some info in it that you would find helpful in 2nd opinion consultations.
Also, I no longer mention every insignificant ping or bloating as I've learned my onc will use that to gain opinions about my cancer progressing or how well I'm tolerating or responding to treatments. She'll then tailor future treatments to something different than what I would've hoped for. I remember showing the med onc a single bump that I had on my arm one week after chemo. Now it's on my record that I have an allergic rash response to the treatment.
I hope that I've mentioned some things that might help or inspire you.
I'm sure many of us can relate to this - and my advice is to get a second opinion ASAP ! I was in a very similar position (and feeling the same way) and was basically told to go home, sort my affairs out and make the best of whatever short time I had left.
I then spent about a week in shock - but thanks to some websites like this one I started to share my story and ask for advice. Almost overwhelmingly the messages were get a second opinion, so I did and asked to be referred to Christies in Manchester. Thanks to the wonderful team there, I'm still here and it will be 4 years in August.
Even if traditional treatments aren't working, they have direct access to a lot of clinical trials - which are also something it might be worth bringing up with your medical team.
I'm sure all on here will be thinking about you (and fighting with you), so you're definitely not alone.
Just as a bit of a follow up note - its always hard to say to our primary care team that we're looking for a second opinion, especially when lots of us are pretty much 'brought up' to never question people like doctors. This was certainly an issue for me, but given the likely scenarios (go home and die or look for other options), it definitely made get those big girl pants on !
Loads of people on here can help you come up with strategies to handle all of that, and the bottom line is that in situations like this you've got to explore every avenue. We're all with you so lots of advice available.
I second what others have said. A second opinion is vital. Go to a big teaching hospital with a good reputation. Get on the case Monday morning. Look on here for recommendations and be pushy. This is your chance to stand up for yourself and your future. Should the second dr say the same as the first then at least you’ll know you’ve tried your hardest to get the best treatment for yourself. I really don’t think that until somebody is in our situation they realise how lonely, scary and uttterly frightening it is. We need forward thinking, proactive doctors on our side who will try their hardest to help us and who will also treat us as individuals. I think sometimes this is lacking hence why our survival rates in the UK lag behind other countries. Be assertive and well informed and stuff it if your doctor feels even mildly put out that you want a second opinion. Any good doctor would be grateful of another’s knowledge and skill. Good luck and take care x
Thank you so much to everyone who has replied to me, I am still very much in that dark place but I have my terrier spirit that just needs a kick and don’t feel as alone as I did with all you lovely ladies behind me. I have had another seven litres drained on Monday which has left me feeling like a herd of elephants have walked on my tum but I do feel better. I was 9st7 on Monday and am now 8st5 so I need feeding up but at least I have space to eat now just need to get my appetite back. My albumin and iron levels are so low so I’m feeling really tired. Came home last night and went to bed at seven and slept right through until eight this morning.
I have an appointment tomorrow with the consultant to discuss either caelyx or tamoxifen. My cns came to see me while I was being drained and I asked about clinical trials. Apparently there are none suitable running at Sheffield but they are happy to sort me a second opinion out at the Christie and see what they have to offer apparently the Marsden aren’t taking any more cases as they are snowed under. I just feel so weak today and wonder if it’s too early to go back for chemo next week and wether my weight loss will alter the dose too much. I know it only has a 20% chance of doing something but it is still a chance. Am I better going with the tamoxifen first and trying to get my body stronger as I don’t feel up to the trek over to Manchester at this time?. So many decisions and a body that doesn’t want to play fair 🙃
I hope all you lovely ladies are having a good day today, my love to all you fighters 🌸🌼🌸
Hi Diana I'm so sorry you went through this torture with no positive hope going forward. I was diagnosed in June 2013 with advanced Stage 3 metastatic OC but my amazing oncologist refused to out me in a category or give up on me..I at the time had 19ltrs drained but they went in through my lung cavity at the time pkeuradixus . That fluid did not return until Jan 2019..just about the time Is started a chemo called Gemzar..I seemed to have the issue this time in my abdomen' I was to be fair chronically ill and needed blood transfusions they drained the aceites I came home but 2 weeks later had to be drained again and felt so unwell, after the second draining my Oncology team suggested that because fluid in the abdomen returns the best solution is to put a permanent drain in. At first, I was opposed to this solution...but I will do anything to be here and around my 3 adult kids so yes my fluid has returned but I am not letting it beat me... I will do anything to stay around . Diana I think you should suggest to your team the tunnel drain it's not a big procedure and it's neat it only entails a bag when drained off and that may only be when needed. Please stay positive and let me know now how you get on XX
Thank you for your quick reply, they have left me with leaflets about a pleurex drain which sounds similar? Like you I have three grown up kids who mean the world to me. They are the ones I am fighting for. Just wish my body would help a little bit as well. Diana x
Diana, definitely second opinion. I've been stage 4 for 11 years. There are so many chemos! And now I'm on ZEJULA.
To get a bit more energy there are shots oncologists usually give for both white counts and red count and iron... Why aren't they doing that RIGHT NOW!!
Oh Sweetheart, I am so so sorry to read your post. It is an awful situation to be in. You have already had such a fight. However, as Pauline has said, you are entitled to ask for a second opinion. It may be the answers from the second opinion are the same. As so very hard as things are, you need to tell your oncologist you want whatever treatment they think will help alleviate all your symptoms. You need if possible to feel more comfortable so you can live your life as best you can with your beautiful children.
You do seems to be a positive person and that is all I can say helps really otherwise you could drive yourself to distraction. We all have really dark days but it is pulling yourself back together again after you have had your down day. What I would say is if you find your down days stretch to perhaps a week then you need to see your Gp or Specialist nurse to see what help is available to you.
Your symptoms appear to be your biggest problem and if your oncologist can help with them you may feel a little better.
I am sending you lots of love 💕 hugs 🤗 and positive thoughts, keep going you are doing an amazing job xxxx
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Advice/ thoughts please
What options after chemo?
Avastin and aching all over!
