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
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Lindaura
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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.
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.
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.
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.
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
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 .
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.
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.
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
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. 🤗🤗🤗🤗🤗
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
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
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.
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
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
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.
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
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.
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
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
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
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.
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.
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
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.
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 .
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.
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!
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 ).
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