Carbo, Gem, Covid and Laura: Hello Ladies, I have... - My Ovacome

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Carbo, Gem, Covid and Laura

Lindaura
Lindaura

Hello Ladies,

I have just returned home after a seven day stay in my beloved local hospital, the RUH.

I only just started my long awaited Chemo treatment of Carboplatin and Gemcitabine 2 weeks ago Friday.

The following Friday I had the second part of the treatment, which was Gemcitabine by itself.

The first week, I suffered from a belly ache and nausea and could hardly eat at all.

After the Gem alone, the belly ache returned and two days later, I was admitted to hospital with that belly ache and vomiting, for IV fluids and anti nausea meds.

The next day, my bone marrow crashed dramatically- platelets fell from 500 to 39, Haemoglobin dropped to 66 (should be over 100), neutrophils dropped to .6 (should be at least 1.1).

All my electrolytes were severely below normal, from Magnesium to phosphorus to potassium.

I was put on every kind of drip, had 2 units of blood and was stuck in the hospital until my bone marrow rebounded, which it did today! Thank goodness.

My platelets had sunk to 25 yesterday, but rose to 43 today and everything else is now in normal range.

BUT, the depressing consequence of this situation is that my Oncologist will not let me resume Chemo.

She is afraid that another dose will be fatal and kill me before the cancer does.

Now that I have rallied, I hope that we can discuss this again in a few weeks’s time, but I don’t hold out much hope.

I was very depressed about this, but my optimism has returned and I know I’ll think of something. Just not going to have treatment in the near future.

I forgot to talk about the Covid-19 virus and Chemo. I DID have the virus, although to me, it seemed like a very slight case. BUT, we don’t know, meaning the scientists, the extent of the damage or the after effects the virus might have on our bodies, especially those of us with cancer and those of us undergoing Chemo.

So, my Oncologist believes that this might have contributed to the severity of my bone marrow crash., which is another reason why she does not want to continue my Chemo.

So, my saga continues...

Hope you are all doing better than I am!

Don’t give up the fight!

Hugs,

Laura

63 Replies
oldestnewest

Oh Laura what a saga! But you will find something else they should try for you and you’ll be grand.

Sending hugs xx

Thanks,

I am already plotting a comeback!

Hugs,

Laura

Fabulous, we’re all right with you xx

That is all so rubbish For you Laura, but you have enormous courage so stay strong and when you get a bit Better they may be able to get you on to another regime. Sending lots of positive vibes.

Lindaura
Lindaura in reply to JustKBO

Thank you for the positive vibes!

They are already having an effect on my plans!

Hugs,

Laura

Hi Laura. What a nightmare you've been through! I'm glad you're home now and can begin rebuilding your strength for whatever the next option is. You've got a great spirit and it will help you find another treatment when it's time.

xoxo

Lindaura
Lindaura in reply to delia2

Yes,

It is so good to be home and I already feel stronger.

I won’t give up.’hugs,

Laura

Hi Laura. From what you say, it sounds as if it was the Gem that you reacted to & probably not the Carbo. You certainly wouldn't be the first to have a bad reaction to Gem. Perhaps when the dust has settled, maybe the Carbo could be matched with a different chemo drug. I'm sure there's a solution there somewhere. Best wishes. Pauline.

Dear Paula,

I am planning on convincing the team to try again with a reduced dosage of both drugs and asking them to test me out by keeping me in hospital as an impatient, so they can monitor me.

Anyway, that’s my plan as soon as I get a few weeks of outstanding blood results.

Hugs,

Laura

Hello Laura,

I have been thinking about you over the past week, wondering how you were getting on with the new chemo. It is such an awful shame that you landed in RUH again, with the awful side effects you have explained, & you must have been through the mill again, you poor thing. Hopefully when you see your Oncologist she will be able to come up with something for you. Maybe like your Inc. said even though the Covid you had was mild, perhaps it has effected your body more than you know. I so hope that they will find answers for you. You are a very tough lady and once your strength returns I know that you will keep up the fight.

I am seeing my new Oncologist on Wednesday so hoping that she will instigate treatment to start asap,as I have finished the Megace tablets now. They have held the cancer back, but I really need to have further treatment now,since the biopsy has shown that the cancer in my peritoneum is definitely from the fallopian tube HG serous type.

Take care, and I hope that your strength returns soon. Caleda.xx

Lindaura
Lindaura in reply to Caleda4

Dear Caleda,

Thank you for your kind words.

I do hope your new oncologist gets you in an effective treatment right away.

Best wishes,

Laura

Caleda4
Caleda4 in reply to Lindaura

Thank you Laura, I will be thinking of you .xx

Dear Laura , just read what you’ve been going through and phew! That was hugely worrying especially knowing the numbers . It’s shocking how toxic chemo is and combined with the unknown effects of Covid , on our bodies, your body is getting the rest it deserves , now that your normal readings are back. A couple of dramas while on Paclitaxol with hospital admissions highlighted to me how vulnerable we are under attack . I hope you are able to enjoy the better days now . Some alternative will come up , without using that particular cocktail .

Have a peaceful day .

Warm wishes

Denise x

Lindaura
Lindaura in reply to Denizt

Dear Denise,

I also had a difficult time on weekly Taxol, but a reduced dosage fixed that.

I can see that the Gem is really effective in killing quickly dividing cells, both cancer and innocent bone marrow, so I really would like to try it again, when I am stronger.

Best wishes and hugs,

Laura

Hi Laura,

Don't give up. Did you see my latest post? I'm not 100 percent but I'm still here and enjoying life after it looking grim earlier in the year.

Love, strength and health to you. Xx

Lindaura
Lindaura in reply to LittleSan

I did see your latest post! Good for you!

And I promise not to give up. I am already planning my next move.

Hugs,

Laura

Oh Laura

You are really going through it. My first thought when I read your post was that the Covid has messed with your body more than you realised and caused you to have a severe reaction to the chemo. You are very positive and determined so will find a way forward. In the meantime build up your strength for the next treatment, whatever that may be.

Sending a big hug.

Nicola X

Thanks, Nicola,

You are probably right.

I now plan to recoup for the rest of this month and then convincing my oncologist to try again.

Hugs,

Laura

Oh Laura, I am so sorry that you have had to stop the chemo after you fought so hard to continue. You have really been through the mill, again. I hope.your bloods come right and you get the opportunity to try again - you are one gutsy lady. Interesting hypothesis on the Covid-19 aspect of your journey. Your doctor could be right but as you say we just don't know. You are such an inspiration to me as I am about to embark on me second round of chemo after two years of remission. I'm just hoping my tests will be ok for me to go ahead. Sending lots of hugs and I'm certain you will find an alternative treatment. 🤗🤗 Jackie x

Lindaura
Lindaura in reply to Mumsie13

Thanks, Jackie,

I wish you all the best in your next treatment plan.

You were very lucky to get so much time off.

I hope your next treatment is kind to you , but effective!

Hugs,

Laura

Hi Laura, I’m sorry you’ve been through all that. That was an awful two weeks. You probably need a bit of time to recover before starting a different treatment. It’s amazing that you coped with the Covid so well, though maybe it is partly responsible for your reaction to the chemo. I’m full of admiration for your optimism and determination. You are strong! You’ll build yourself up now and be ready for whatever they plan for you next. Be good to yourself. 🤗🤗🤗🤗🤗

Anne 😘

Lindaura
Lindaura in reply to WoolyHat

Thanks Anne,

I am quite determined to turn this around, build myself up into the poster child for new Chemo options!

Hugs,

Laura

Oh Laura - when will it be your turn to have some good fortune? You had fought so hard for your chemo then it does that to you. Enjoy your rest, spoil yourself and build up your strength to fight on.

Hopefully, if it was covid that has affected your bone marrow (+ the chemo) they can find something that suits you better. Lots of love and hugs

Jenny xx

Lindaura
Lindaura in reply to jenny8c

Thanks, Jenny,

You are so right. I am concentrating on building myself up and I feel stronger already!

But I know I must be patient and give my Oncologist a chance to revise her thinking!

Hugs,

Laura

Dear Laura

Sorry to read your post. Remember there is a lot of ammunition that can be used. Once you get your mojo back you'll be more positive. All the best Sylvia.x

Thanks, Sylvia,

I shall rest and eat well and build myself up for the next battle!

Hugs,

Laura

I can see it. You’ll be the one to do it! 💪

Hello Laura,

so sorry to hear that the new Chemo regime made you flippin poorly. What an awful time you must have had. You are so wise to let your body rest awhile now and I am hoping that once you have recuperated your team will have some proposals for the next treatment.

I think your experience of Covid and it’s possible impact on your body are a timely reminder to those of us on Chemo to continue to be vigilant .

I’ve just had a second infusion of carbo caelyx and am finding it tough for 7 days but do- able. The two + really good weeks are such a tonic and it’s great to be as back to as normal as shielding allows.

Sending you a virtual hug & 😘.

Jan. x

Lindaura
Lindaura in reply to Litchick

Dear Jan,

Good to hear you are doing well on the Carbo/Caelyx regime.

Just give in to that first week of hell and pamper yourself so that you can enjoy the new found freedom of your 2+ weeks!

Hugs,

Laura

Hi Laura

So sorry to hear you have had such a rough time. Been wondering how you were doing.

I was give an injection of Lonquex to boost immune system to take at home after my first infusion of Caelyx.

Ended up in A&E a week later cos slightly breathless and heart racing.

Bloods showed neutrophils of 12! and everything else pretty normal. Not sure the consequences of neutrophils being so high.

Really worried about next infusion in two weeks, never been so tired.

Hope you soon get back to full strength and are able to continue chemo.

Maybe that cure is just round the corner!

Love and Best Wishes

Janet

Lindaura
Lindaura in reply to janwen52

Dear Jan,

We are all so different!

I was totally knocked back the first week + on Caelyx, but recovered in the second week enough to lead a pretty normal life.

I just hope there is nothing they’ve missed that could be affecting you so badly.

Best wishes,

Laura

HiI Laura, What an absolutely awful time you've had! And this horrible COVID19! I have ju st been tested for COVID - the first test came out as inconclusive and the second one negative - these just a few days ago. I am now just getting over severe diarrhoea which I've had for about a month and whilst my test was negative I just wonder if I did, in fact, have COVID. They are saying that some people can have diarrhoea related COVID but not necessarily with other symtoms. Who knows and if you have had it what the lasting effects are on your body. Now,sensible to rest your body and for you to re-build your resolve before getting to grips again with your oncologise. Wishing you all the very best. Gwen x

Lindaura
Lindaura in reply to thomas62

Dear Gwen,

You are right to worry. The damage that damn virus gets up to us still unknown.

I hope your symptoms resolve soon.

Best wishes,

Laura

thomas62
thomas62 in reply to Lindaura

Thanks Laura. Gwen x

What a terrible time you have been having. Best of luck getting over this latest blip and all the best for some new treatment. Love Julia

Lindaura
Lindaura in reply to juliamillen

Thanks, Julia,

I am already plotting my nest campaign!

Hugs,

Laura

Gosh Laura--you have been through so many challenging side effects of different treatments it's great to see how determined you are and what you will come up with next to tame the beast. So glad you are feeling better and happy your numbers are all coming back or are normal again. Covid-19 seems to keep on giving, long after it's gone--let's hope that's the last of what it's after effects if indeed it was the culprit. Looking forward to hearing what you and your team come up with next. In the meantime, I hope you continue to get stronger and stronger. Hugs, Judy

Lindaura
Lindaura in reply to Maxjor

Thanks, Judy,

I feel stronger already.

Being home in the heart of my nurturing family is great.

Hugs,

Laura

What a nightmare! And what a huge disappointment after waiting so long for the chemo. It may be a reduced dose is what you need or perhaps something else entirely. Good luck anyway and build up your strength.

I am so hoping the docs wil see it that way and give me another try at a reduced dosage.

Anyway, I am going to campaign for that.

Hugs,

Laura

Oh Laura! Did they not offer gcsf injections from the getgo? That’s what my lot are doing because of Covid and they stop your immune system crashing.

I’ve also had the chat about chemo being dangerous but for the first dose I had a three quarter dose..I just think they need to consider out of the box solutions atm . Good luck xx

Lindaura
Lindaura in reply to Lyndy

I totally agree, Lyn.

I did get the Flagrastim injections to boost my neutrophils, but my crash was far beyond anyone’s expectations, especially as up to this, my bloods have been famously resilient and my platelets always abnormally high.

They were at 775 two weeks ago and a week later 39.

That’s jus weird.

Anyway, I am hoping a reduced dosage will save me, but I have to be strong and convince my doc to take the risk.

Hugs,

Laura

Oh Laura how horrendous for you, am so sorry. You must be pleased to be home where you can gather your strength and then see what you might be able to pursue with your oncologist. Judith x

Lindaura
Lindaura in reply to Jud15

Dear Judith,

I am doing exactly that. Gathering my strength and preparing to convince my team to risk chemo again - at a reduced dosage!

Hugs,

Laura

Well done Lindaura. I hope you're feeling much better. You are definately your own best advocate so go to your next appointment armed with your questions and do your research. You'll then feel satisfied that you have done all you can to get the best care for yourself. Thinking of you, sticky3006 x

Lindaura
Lindaura in reply to sticky3006

Thanks,

I feel stronger already!

Hugs,

Laura

You really are inspirational! well done laura sending BIG hugs 💗💗💗💗💗

Thanks, Claire,

Just have to keep that in mind.

Hugs,

Laura

Dear Laura,

So happy to hear from you and to hear how positive you are after all your trials and tribulations in hospital. Makes my fights seem so wishy washy.

Tomorrow I am in for another tummy drain, will not get another trial at the permanent drain until the 15th.

My Paclitaxel has been paused for the moment because my oncologist is worried about my overall strength - sounds as if our oncologists are very much in the same place regarding chemo.

But more worrying is my own weakness towards my own illness and reading your notes to us all has awoken me to this and how much fight you still have a left and how focussed you can be and how cushed I feel instead.

Love you Laura and always thinking of you.

Have to find this fight again and see if I can get it back into action. A big hug. Anne XXX

Lindaura
Lindaura in reply to Shorty864

Dear Anne,

So good to hear from you! I totally understand your feelings of helplessness in the face of this disease and the effects of our desperately needed treatment.

I was terribly depressed when my Oncologist told me she would not continue Chemo, even at a reduced dosage.

I felt doomed.

I started planning what I would need to prepare my little family to go on without me.

I still have those plans in the back of my mind, but this week I am recovered enough to keep up the fight!

I hope you can somehow get the treatment that will give you a better quality of life.

I wish the taxol wasn’t so damn hard on us!

Be well, Anne.

Many gentle hugs,

Laura

Shorty864
Shorty864 in reply to Lindaura

Dear Laura,

Just finished putting in the new drain, so can't wait to to go home. Just to have to really hope this goes well now - I need a big break and hope Paclitaxel is going to be kind to me.

And that me and you are going to get a good break.

How's it going for you today my dear, how's the fight going? A really big hug from Cornwall.

Lots of love Anne XXX

Lindaura
Lindaura in reply to Shorty864

Dear Anne,

I am doing really well today. I am hungry once again and have been eating loads of real food!

Husband Charley drive me to the hospital for a blood test in the Chemo ward.

It was tiring just to walk around, but good for me.

The results came back quickly and everything was within normal range, except magnesium, which plummeted further, don’t know why.

The Chemo nurse called me to set up an outpatient appointment tomorrow morning for another infusion.

Evidently it is dangerous to be this low.

I guess that’s why I am so tired.

Otherwise, I am great.

No pain or nausea and that is a great relief.

I just wish you could get some relief!

Hugs,

Laura

Shorty864
Shorty864 in reply to Lindaura

Dear Laura,

I am having a tough time, but we are trying to live these last days as best we can with my lovely family, no palliative care or hospital for me - well will not be not staying in a hospice a least. Trying be as much together as possible. A big, big hug dear. ANNE XXX

Lindaura
Lindaura in reply to Shorty864

Oh Anne,

You are breaking my heart.

This is such an awful disease!

I am not ready to let it take me yet, so I am clinging to hope.

I have been forced to think about the end game though.

I will choose the hospice here, Dorothy House, as it is in a great location, just 15 minutes away.

My basement room is too awkward to end my days in.

I would rather have my little family visit me at the Dorothy House.

But I am working hard trying to keep myself out of it for now.

I just wish you had better news. You’ve been through so much.

But I am glad you husband and son have risen to the challenge.

I know it’s a hard one.

At least you lived in Rome!

You’ve done so much in your life and that’s a great thing and a lot to be proud if.

I love you.

Hugs to all of you,

Laura

Dear, dear Laura,

so sorry about your news. I've had you on my mind constantly as I'm sure we all have. Knowing you, you'll find an answer sometime in the near future. Are parps out of the question at the moment?

I'm still on Rucaparib and according to my oncologist I'm doing well where side effects are concerned. However my CA125 is up slightly from 11 to 14 after 2 months so not sure if it's working yet. Just wondered if it could be an option for you. You'll have thought of everything I suspect and once more pray something will be found for you.

Lots and lots of love,

Angela xxx

Dear Angela,

Lovely to hear from you!

Once upon a time, I was on Niraparib. I felt fine on it, but even though I am BRCA1 positive, it did not stop the spread of my cancer.

So, I was taken off of it.

There are still the Hormone blockers, like Letrozole, so I do have other choices....

Best wishes and hugs,

Lay

Omg what a terrible time you have had. Prayers now for a different treatment and hope this Covid vaccine works so that we can all get on with our cancer treatment .

Lindaura
Lindaura in reply to Neona

Thanks, Neona,

What a weird situation to be in.

Guess I will have to wait and see what’s next.

Best wishes,

Laura

Sorry to hear this - your reaction to the chemo doesn’t surprise me given what I’ve been reading about long term issues from the COVID virus / our neighbour who is younger than you and not got cancer is still struggling wit severe breathlessness several weeks after her bout of it - If chino off table for now is it worth looking at the repurposed drugs / alternative route as there isn’t a lot on table from conventional medicine if oncologist reluctant to give chemo.

Lindaura
Lindaura in reply to Coldethyl

Yes,

The situation definitely calls for some re-thinking.

Next week I talk to my Oncologist after my latest blood tests which will include a CA-125.

I will be gently forceful, if my bloods are good and patient if my bloods have slipped.

I know now I have to be in a better state than I was when I started Chemo this last time!

Hugs,

Laura

Hi Laura, I’m so sorry to read that you had such an awful week in hospital with the chemo. Rest up and recover and you’ll be ready to try the next combo. You’re a natural born fighter!

With lots of love and gentle hugs,

Denise xxxxx

Thanks for the encouraging words, Denise.

I was doing very well yesterday, after an emergency magnesium infusion, but I don’t feel so great today.

Hoping u perk up tomorrow!

Hugs,

Laura

Hi Laura, I tend to suffer regularly with low magnesium and have read up about which foods help ( as well as infusions when needed) and surprisingly it’s dark chocolate, the higher the cocoa content, the better! Get on the dark chocolate as at least it’s good to eat! Almonds are great too.

I really hope you have some energy back again tomorrow.

I recently had suspected Covid ( though by the time I was tested, I was negative). However, my symptoms were all there and I was really rough for four weeks. I was really worried too as my CA125 was going up by 6 points for a couple of months running. As soon as the Covid symptoms started to ease, however, my Ca has dropped back by 13 points and is now back to normal. It just goes to show that the virus does affect us in ways we may not initially realise.

Interestingly, I had swollen, painful joints which I’ve never suffered from afterwards and an itchy rash all over my hands! It all disappeared after around 5-7 days. Very odd. I do wonder if that’s why your body wasn’t happy with the chemo right now ( Given some more recovery time, you may well be fine again ).

Lots of love, Denise xxxxx

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