Laura ?

[TarbonNZ]

Has anyone heard from Laura recently, she seems to have gone awol. ??

[Lindaura]

Hi there,

Sorry to be so absent. I have been finding it hard to keep up with this wonderful forum in the age of Corona virus.

When I was in the DICE trial, I didn’t want to post until I had news, but in the end I did post the disappointing results in my No Dice post.

My cancer did progress on the trial, albeit slowly, so I don’t believe it was a complete waste of time and energy. Here’s why:

I had fun on my weekly trips to London.

I learned about trials in general and the Royal Marsden in particular,

I learned how to use the excellent Train assistance program, Assisted Travel, so I did not have to kill myself getting from the platform to the taxi rank, and most importantly, it slowed down the cancer progression.

The end of the trial coincided with the beginnings of the pandemic in London.

It was good to not have to make the weekly trips to London, so that was a good time to stay in Bath.

In my last visit, the head research consultant, Susanna Banerjee, recommenced that I return to my consultant in Bath and begin treatment here with Carboplatin and Gemcitabine.

With my cancer progressing, and otherwise feeling pretty darn well, I was anxious to begin treatment.

Then, wham!

The virus hit and Chemo treatment became a mirage.

Plus, I found out that I had already contracted the Virus!

I tested positive, coming into hospital with symptoms of pneumonia.

But, mine was a mild case and I was out and back home in two days.

But, while in the hospital, I was visited by an Oncology registrar, who told me not to count on getting treatment.

She seemed to be implying that I would NEVER get treatment .

Kind of the “Quality VS Qantity” arguement, even though my cancer was still small, I am BRCA1 positive, and, aside from this slight case of pneumonia, I am a hardy and vital older woman, who does not mind treatment, no matter how hard it might be.

Since then, I continue to get the impression that we Ovarian Cancer patients, are going to be sidelined, because we are not completely or definitely curable, in favour of the easily curable cancers.

I plan to talk to the support persons from Ovacome to discuss this further.

Meanwhile, I HAVE had Covid-19, for me, it was not that bad, I am building up my energy again, as one always must after finishing 6 months of Taxol.

I do not have ascites or pleural effusion - yet, but as days go by, I am certain my cancer will keep spreading.

I can understand that I need to wait, but surely not forever?

Sorry for this long reply,

But this is where I am at.

Ready to fight!

Keeping up the fight!

But hugs to you all in this forum,

Laura

[OvacomeSupport Partner My Ovacome Team in reply to Lindaura]

Hello Laura,

Thanks so much for updating us with your recent experiences. We are really glad to hear that you are recovering from Covid-19.

Please do give us a call if it would be helpful to discuss anything else further. Our support line (0800 008 7054 or 07503 682311) is open until 8pm this evening, and 10am - 5pm any other weekday. Or of course you can contact us by e-mail, instant chat or text, whatever you prefer.

Best wishes,

Laura (Support Services)

[Hidden in reply to Lindaura]

Hi Laura - so good to hear you are feeling better, well, as well as any of us can during this horrid pandemic! Keep up the fight. 😍

[Caleda4 in reply to Lindaura]

Hi Laura, Pleased to read your post, & I hope that you stay well during this very difficult time.

Take care xx

[Manchesterlady in reply to Lindaura]

Hi Laura , so lovely to here that you are still battling on , you are one strong inspirational lady . Sending love and prayers,

Sheila xxx

[27-359 in reply to Lindaura]

This is my fear too. The general impression I am getting, is that since we are older and classed as incurable, we are going to be sidelined!

Jenny

[LittleSan in reply to 27-359]

Hi Jenny, not sure it's an age thing. My two friends who are in their 40s and 50s have been told that their chemo is now discontinued indefinitely as there is a greater risk currently from catching covid 19 in the hospital environment and then also on the outside. They also said resources are also an issue with staff being redeployed in the fight against the pandemic on the front line, in the research, labs and manufacture of drugs.

Xx

[27-359 in reply to LittleSan]

I hope you are right and we will start to see an improvement in Covid numbers soon, and a return to treatment for cancer patients.

Jenny

[LittleSan in reply to 27-359]

I don't envy the medics making terrible decisions at the moment.

[Lindaura in reply to LittleSan]

I am shocked by this.

I thought my age was a consideration, but your friend are much younger, and their cancers are real and need treatment.

Our worst fear is that our cancers will spread to where we can no longer stop them with Chemo.

Now I feel lucky, although I am still fearful after having the Oncology team warm me that I might not get any treatment (ever again), because I live in a small city in the Southwest, Bath, with a good hospital, but very few cases of Covid.

So out ER is practically empty and I imagine our Chemo Suite is, too.

I am hoping that when no surge hits here, my Oncologist will relent and consent to treatment.

Hugs,

Laura

[LittleSan in reply to Lindaura]

Sorry I forgot to reply properly Laura. So sorry you feel in limbo I'm feeling bewildered and sad for you all who've had your treatment interrupted. I've not had chemo since January and expected a gradual decline. I don't want to count my chickens and am not having any formal monitoring other than symptom reporting, but I actually feel better than I have for 21+ months or so (since I started continuous rounds of treatment) . I hope you get this surge too and then can continue your treatment when the pandemic is over. Big hugs and good health to you. Sandra💐 😘

[TarbonNZ in reply to Lindaura]

Hi Laura, lovely to hear from you again. Treatment is still going on in NZ, unless they think it would be a real risk in terms of your immunity, and that it would be better to wait. They are saying that a6 week break will not hurt.

I have completed a successful treatment with just Carboplatin, CA125 went from the 200s down to 13, then in the 6 weeks after the last infusion, until I had a follow up, it immediately started the journey back up again. The tumours have shrunk in size, and the Mets to the liver appear to have gone, but I am now back on 2 mthly watch and wait. I have one reasonable size tumour, which grows and then shrinks a bit. When I asked, he did not discount the fact that they could use radiotherapy to target it, which is a positive.

It was three years this February, since I was diagnosed. Your comment about ovarian cancer patients being effectively last cab on the rank made me smile. I was just sitting here with a cup of coffee today, (finally found a pod I like so I can use the machine to make a flat white, to replace my beloved flat white I get at my local cafe,after my walk each morning ). I was thinking about the fact my appointments since I became classed as "incurable", have moved to a Friday. I was wondering whether the people who have a better chance of a cure are on a Monday, and the less likely you are to get better the further along the week you go, until to reach the exit door, which is Friday. A bit like if you go to work one day and your hole punch has gone, and you are moved closer to the door, you are on your way out. ! I do have a bit of a weird sense of humour, and I am sure my Oncologist sometimes looks at me with a look of horror in his eyes, but if you don’t laugh you’ll cry.

I think this Covid-19 must be getting to me. We are 2 weeks into lockdown, with two weeks to go, (hopefully). Any way, I have rabbited on enough. Stay safe Therese 💙

[Mumsie13 in reply to TarbonNZ]

I know where you're coming from. I sometimes have a really warped sense of humour. Love you're analogies. My onc/gynae appointments have gone from Tuesdays to don't communicate with the patient at all. Investigations into possible, now probable recurrence (as my symptoms are ramping up) were cancelled with a "someone will be in touch". Four weeks later still waiting. Still leaving messages. Still no response. Still no answers. Still feeling I am collateral damage but no-one wants to tell me. I am pretty sure the hospital I attend (like many others in the UK) is overwhelmed and under-resourced but surely someone can find the time to phone me about my treatment status even if I don't have many, or no options. Anyway, enough of this pity party - I will get an answer one way or another.

You seem a really positive person and you do have options. Keep up the sense of humour. Remember laughter produces lots of those lovely, happy and useful endorphins.

[27-359 in reply to Mumsie13]

Yes me too

Scan three weeks ago after raised CA125, and I can't get to speak to anyone!

Jenny

[Mumsie13 in reply to 27-359]

Keep trying Jenny. I had a breakthrough today. A CNS finally called me back today. Apparently I should have had a phone consultation yesterday that didn't happen. I knew nothing about it but we are making progress.

Jackie

[27-359 in reply to Mumsie13]

Let's hope so!

Keep well.

Jenny

[SUE7777 in reply to Lindaura]

Hi Laura,

I can't see why your treatmentis being delayed. If you've had the virus that can't be used as a reason, and that seems to be the main one they are using . I think you should get back to them and put up a fight to get your treatment. Be very assertive, ask why you've been side lined and fight the discission. Good luck. Sue xx

[Maxjor in reply to Lindaura]

It's so good to hear from you Laura. I knew you had the virus, which made me more worried not hearing from you. You seem to confirm what my oncologist said which is while on taxol, I would fight the virus "like anyone else my age" basically saying this treatment would not make fighting the disease harder. Not saying we would all be so lucky to have it as mild as you did but you really did get it mildly and best of all, do not have to worry about getting it anymore! I am upset about the lack of treatment for so many of my UK teal sisters, you included. Not OK. It does sound like they are prioritizing without thinking what they are really doing to those in wait. Wishing you the best Laura and that your recovery from treatment is complete and you feel your best, then start a new treatment soon! oxoxox Judy

[jenny8c in reply to Lindaura]

Hi Laura,

Always good to hear from you as you are such an inspiration to us all. Sorry to hear about your chemo hopefully it will not be too long before the numbers going to hospital decrease and you can get your treatment. I know my oncologist is spending 2 days a week virus fighting as well as dealing with her normal cancer patients, they are all going to be so exhausted at the end of it. I am lucky in that I have been told I can continue for now but with a delayed CT scan. They have moved all chemo out of the main hospital into a small one a few miles away where there are no wards or virus patients so a number of us can continue.

Keep fighting my friend. Wishing you all the best with lots of hugs

Jenny xx

[Mumsie13 in reply to Lindaura]

Hi Laura

Glad you're back and getting "fighting" fit again. Your positive posts help so much. I agree with others posters COVID-19 can't now be used as a reason to deny treatment. However, I have a feeling this has much more to do with your treatment status regarding the NICE guidelines than anything else. If you are feeling well enough to do it, you should fight to continue treatment.

Wishing you all the best.

Hugs.

[OvacomeSupport Partner My Ovacome Team in reply to Mumsie13]

Hello Mumsie13

Thank you for your comment. In terms of the NICE guidelines, as with other clinical guidance, they're intended to be an aid to decision-making. The guideline recommends 'ensur[ing] each patient is considered on an individual basis,' and decisions are being made for each person at their specific hospital at that time.

These are uncertain times, and changes to treatment are giving rise to anxiety. We're here to support anyone affected by ovarian cancer Monday-Friday from 10am to 5pm with extended hours to 8pm on Tuesdays, so please get in touch with us if we can help with anything or if you'd like to talk anything through.

Best wishes

Julia (Ovacome Support Services Officer)

[Mumsie13 in reply to OvacomeSupport]

Hello Julia

Of course; I understand what you are saying. It's the decisions "being clearly communicated with patients" bit that I personally am having problems with. It seems a decision had been taken but I have waited nearly a month (and left many telephone messages) to get a response and some answers to my questions. Coincidentally, today one of the CNSs returned my call today and my case was discussed at an MDT meeting in March and I should have had a telephone consultation yesterday but there seems to have been some miscommunication. It happens. We did however make some progress so things are looking a bit better at the moment.

Take care.

[OvacomeSupport Partner My Ovacome Team in reply to Mumsie13]

Hello Mumsie13

Thank you very much for your understanding. It can be a difficult time when you're waiting for answers. I'm glad to hear that your team have been in touch and things are looking a bit better now.

Best wishes

Julia

[thomas62 in reply to Lindaura]

Hi Laura, Thanks for updating us all. Glad you have had a good recovery from the virus and feeling better. Couple of things abt the virus, treatment and NICE that ladies will be interested in. These have been posted in recent days. Firstly, delia2 posted a link - aasldpubs.onlinelibrary.wil.... which information give us all a good reason for pushing for continued treatments. The second one by Hidden informing us of the new NICE guidelines for prioritisation of cancer treatment. There are two sets of info/guidelines. We all should read these - we need to make our voices heard. Best wishes to all. Gwen

[JustKBO in reply to Lindaura]

Keep fighting Laura and if you do speak to anyone about the situation relating to OC treatments and if you need support in any way let us all know. KBO.

[Mptelesca in reply to Lindaura]

Laura! So good to hear from you. As if you needed to get swept up into the COVID tornado! So sorry you had to go through this. On top of trying to figure out how to get treatment. All due respect to the oncology registrar who said you will not be getting treatment,...she doesn’t know you well. Making that statement was cruel. You have been so strong and so positive all along.

I had the same thoughts about getting sidelined. I have been sidelined regarding getting my bloods and having an ultrasound for my thyroid. Last scan was clear except for a nodule on my thyroid. I’ve been in isolation for 3 weeks now.

I know you will continue to get stronger. You will get that treatment and come out with flying colors. You always do. Please stay in touch. Much love to you.

Xox

Marisa

[delia2 in reply to Lindaura]

Hi Laura. It’s really nice to get your update and know that you came through Covid 19 so successfully. As others have said the risk of the virus can’t be an impediment to your chemo. I hope you will push hard to get it sooner rather than later. Meanwhile a short break from chemo can build up your body for the next round. You are an inspiration in your determination to take on the treatments! Xoxo

[SASSY196 in reply to Lindaura]

It would seem to me that as you have had coronovirus there is no reason at all not to progress to treatment unless it is against your best interests for a different reason. The Guardian published some questions that cancer patients should ask before commencing chemo , one of them was what is the benefit to me of having this treatment? Have you asked this? Was the rationale for not treating on a resource basis or for your ' quality' of life? If the latter surely that is your choice to make.

Can I ask were you immune compromised when you had coronovirus?

Sara x

[Di16]

I have a recurrence, & have been taking Letrozole for nearly 2 years. Was due for a scan last week & an appointment yesterday to see if it is still working. But it has been postponed for 2 months with the explanation that for me they feel it is safer to postpone than to travel to the hospital this week with Covid 19 being so rampant. I know the ct waiting room is so small it must be impossible to keep a distance from others. Di