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Paclitaxel buddies

Bee3
Member

Re: Paclitaxel buddies

Hi Jen,

I was concerned to read that you were struggling and then saw your very positive post on Saturday.

I am so pleased you have times as without them we do struggle. It's easy to feel that we are the only ones with any sense of urgency. Really hope that you will be able to start the Capecitabine tomorrow. Will be thinking of you. 

I have never heard about the liver sack stretching. I have a large tumour in my liver of over 5cm as well as smaller tumours and can only think that the liver would stretch if the tumour was growing. Will have to ask at my next onc meeting. 

Hope you can start tomorrow and that you have minimal, preferably no, side effects. 

Sending love and every good wish your way.

xx Bee

Jennie60
Member

Re: Paclitaxel buddies

Thank you Alwayshope, you are always so positive and encouraging.  Just what I need at the minute. I rang the hospital yesterday and was told results should be back by Tuesday. I can collect treatment on Tuesday if I get the go ahead. 

20/24 paclitaxol is brilliant!

 I really hope its working for you. I was told the pain isnt necessary the mets getting worse but the liver sack stretching. Less worrying according to my oncologist. Hope the CT is soon. Love and best wishes to you. Take care. Jen 💕xx

 

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

I hope your blood results are back soon and you can start your new treatment. I can understand you’re struggling with it because the delays are frustrating and worrying. You’ll soon be starting this new treatment though and I am sure it will put those little blighters back in their place!

I’ve had to chase my CT scan up and I am still waiting for my appointment. Hoping it comes through this week. I worry about every twinge and like you I’ve had pain on my right side. I just want to crack on with the CT scan now and see what’s going on. I’ve had 20/24 Paclitaxel and I am just hoping it’s still working.

Take care. Sending love to you and hoping your treatment starts very soon xxx

 

Jennie60
Member

Re: Paclitaxel buddies

Hi Bee, good to hear things are settling down for you on your new treatment. 

HI Alwayshope, hope you hear from your scan soon, and see fantastic results.

As for me, still anxiously waiting to start Capecitabine! The blood test wasn't done properly the first time  so had to be re done and the second one hasn't come back yet. I can't start till it does. But on Monday it will be 6 weeks with no treatment and liver pain! I'm taking steroids and co co coding to help with that.

  

I'm struggling with it to be honest. It's the first delay since diagnosis and it feels so scary. 

Hope all continues well for you both and everyone on here. Take care, stay safe. Lots of love 💕Jen xx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

Glad you’re feeling much better on your second cycle. Your body must recognise it now and know it is there to help you. It sounds like you have got yourself into a routine now, which always makes me feel more settled.

I am still waiting to have my next CT scan. It was requested 3-4 weeks ago and I still haven’t heard anything. It’s not actually due until the end of January, but was requested earlier due to my swollen hand (which thankfully hasn’t got any worse). Hoping I have my appointment through very soon.

Take care Bee. Sending love and best wishes xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

I hope you have been able to start Cape. Sorry to hear you have had liver pain, but very hopeful that Cape will sort your liver out. You had fantastic results from your first scan, so you just keep plodding on and I am sure those positive scan results will return.

Great news that you don’t have a blood clot and very thorough of them to check it again for you to rule it out.

Sending love and best wishes to you Jen ❤️Xxx

 

Bee3
Member

Re: Paclitaxel buddies

Hi Jen,

The second round of treatment is going well - it's my free week this week then I begin the third cycle on Tuesday. I felt awful after the first lot, sick and so tired I felt I was unlikely to be able to continue, but feeling much better now so will carry on as long as I can. Hopefully it's working!

I am really sorry that you have had a rotten week. It feels disheartening to be told that your CT scan shows growth and you have to start a new treatment. Weird that one scan showed a possible blood clot in your lung and the second didn't. So glad they discovered it didn't exist. Still it must have been such a worry while you weren't sure.

There's a very, very long thread on Capecitabine which I did read over several days when I was on Capecitabine. It is a helpful read. I think Capecitaine is good for many people and it worked really well on shrinking my liver tumours. The pain of it is you have to take the tablets with food which I found difficult when I just didn't feel like eating. Luckily the thread says that a couple of digestive biscuits could constitute a meal!

Wishing you all the best as you start this new treatment and hope it works for you for a long time with minimal side effects.  

It is so hard for us all especially as we try to keep positive for our families.

Thinking of you.

Love Bee xx

Angel Eyes
Member

Re: Paclitaxel buddies

Hi Jen, 

Sorry I've been missing from the thread of late. Hope you continue to bear up. This SBC is a bloomin' nuisance. Thinking of all of you. 

 

All best, 

❤️

Angel Eyes x

Jennie60
Member

Re: Paclitaxel buddies

Hi Bee,

Hope your treatment is going well, will minimum side effects. 

Its been a bit of a bumpy road in the last week. First ct showed growth and a possible blood clot my lung. Second ct checked the clot and it thankfully didn't exist! Bloods were taken to annalise if I was ok to take capecitabine as a certain enzyme could be dangerous. This was sent away and results if ok Thursday mean cape begins but today more bloods needed as first were not sent or taken properly. I'm anxious to get going on treatment as I was Ill yesterday with liver pain and am on meds for that now! Phew hard week. But nobody said it was going to be easy, did they?

Thank you for your reply and good wishes. Hope we all continue to keep in touch and live our best lives for a long, long time.

Stay safe, stay well. Love Jen 💕xx

 

Bee3
Member

Re: Paclitaxel buddies

Hi Alwayshope,

Really hope you have been given a date for your scan and that it  brings you very good news. 

Love from Bee xx

Bee3
Member

Re: Paclitaxel buddies

Hi Jen,

I am sorry to hear that the little devils in your liver have grown back. When I was on capecitabine it really helped blast the tumours in my liver so I really hope it does the same for you. I only came off it because the tumours in my lymph nodes and spine grew. Lots of people find Capecitabine very manageable.

I think its important that we know what our next treatments will be otherwise it is really scary. 

Hope you do really well on cape and don't have any side effects.

Love Bee xx

lovemama
Member

Re: Paclitaxel buddies

Hi Jen, When did you stop Paclitaxol ? Maybe it takes sometimes for the neuropathy to fade away.  Below are the information which I found from my cancer center (in Canada) website.

ps . I finished my 8 cycles 3-weekly Paclitaxol treatment in May,2019. Started from cycle 6 and up to now,  I am quite slow to feel if hot/cold smooth/rough from my finger tips. It seems my fingers were soaked in water for long time. After cycle 6, My oncologist had warned me she needed to reduce my dose by 20% otherwise it might be permanent but I refused.  🙂

 

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Jennie60
Member

Re: Paclitaxel buddies

Thanks Alwayshope. I'm really hoping your scan shows good things for you. 

I'm just relieved my oncologist said there are loads of options still. It was a bit scary as I had to gave a second Ct because they suspected a blood clot on my lung. Thankfully no blood clots were found. 

So here I go again, I will start Capecitabine next week when bloods have come back.

Hope you are still coping with neuropathy,  I think mine is a little better. Take care. Lots of love Jen 💕xx

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

Sorry to hear the little blighters have grown back. Probably due to the break in treatment, as yours had shrunk well prior to that.
I hope this new treatment regime suits you and the side effects are few. Stay in touch and let me know how you get on. My scan is imminent, although no confirmed date yet. 
Take care, stay safe and keep positive. Love to you and all the ladies on here xxx

Jennie60
Member

Re: Paclitaxel buddies

Hi ladies, hope you are all ok. 

I'm hoping to stay in touch, although no longer on Paclitaxol. Sadly the chemo since the last scan in October or because of the 5 week break because of neuropathy hasnt worked. The little devils in my liver grew back again! So the plan is to start capecitabine next week. I'm ok with it, as long as there is still an plan to follow. I'm always scared of being told there wont be! 

Any way, onwards and upwards. Take care. Hope side effects are few and treatment is successful. Love Jen 💕xx

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope, thank you for your encouraging reply it's just what I needed. It's good to hear you are persevering with the neuropathy. I have short walks too and think it helps, although not totally enjoyable at times. Hope you manage to continue with the treatment and results are fantastic.

Amy it's good to hear even in tier 4 you are getting out and about. Its important for our mental health and sounds like you are staying positive so that's great. Good to hear the side effects have settled and you are feeling better. When I feel well I'm positive, any unusual pain and I'm worried. This near to a scan is always the same for me. 

Bee hope you are doing well. 

Take care ladies, happy and healthy 2021. Love Jen xx💕

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy,

Sorry you haven’t been feeling great after your first treatment, but hopefully the sickness meds will do the trick.

Sounds like you’ve had lots of nice walks and family time, which is obviously helping 😊I need to walk more, but my toes haven’t made it easy. I am going to push through it though, because I feel better being outdoors walking our lovely dog.

Good luck with your next treatment. Stay safe and take care xxx

Bee, I hope you’re keeping well too xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

Glad you enjoyed Christmas Day. I hope 2021 is a positive year for you and all the ladies on here. 
I am hoping your scan results are fantastic. You had such a great reduction last time, that I am very hopeful there will be even further reduction for you this time. Try not to worry about the pain in your side. I too have twinges on my right side and it’s hard for our minds not to run away and imagine things. 
Best of luck with your scan and results. Stay safe, take care and keep that mind busy! Xxx

amyc
Member

Re: Paclitaxel buddies

Hi everyone

I've also been trying to keep my mind off hospitals etc and have been doing pretty well. I am feeling quite relaxed and calm at the moment, and enjoying it. My first lot of new treatment was pretty grim as I think I told you, but I was back to normal after 6 days so have been feeling really well since then. I’ve spoken to my consultant and she says she will change the sickness meds so hopefully it will be better for session 2 next week. I think I’m early enough in the treatment to feel quite hopeful, and my scan won’t be until Feb so I don’t have that to worry about for a little while. Just trying to stay positive and hope for a good outcome. 

We’re in London so have been tier 4 for a while now. My partner has been off work and we’ve got into a little routine of touring various parks and playgrounds and then watching Disney movies at home. There’s not much else we can do! 

Good luck everyone with scans and treatment and I hope side effects improve all round xxx 

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope 

I was hoping you were just taking some time out to enjoy Christmas with your daughter. Ive been thinking about you. 18 treatments well done! Hope when the scan comes it shows good things. Aww your toe sounds painful, hope they sort that out soon. 

 

I'm still trying to sortneuropathy. I had a lovely Christmas day with my family but then felt exhausted on boxing day. I like your hippo time idea, I definitely do that too. 

My scan is on Sunday, I'm nervous as always but have also experienced a bit of pain in my right side which is playing on my mind too. As you say, it's hard, but we will row on together, pulling each other forward through 2021! 

I hope the next year brings us all, good results, less side effects and lots of happy times. Lots of love to all xx

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Ladies,

I have been thinking about you all, as I do a lot, but I didn’t want to think about b.c. all of the time (although it’s hard not too!), so I haven’t been on here for a couple of weeks. Just tried to concentrate on Christmas, as our Daughter was so excited 🎄

Jen, I hope your Neuropathy is slowly improving. Mine is still here , but it hasn’t got any worse. I could do without it though! My big toes smell (sorry)! They’ve ordered some cream for them as they think it’s fungal. I had treatment number 18 yesterday and should be having a scan soon.

I hope you enjoyed Christmas with your family and had cuddles with your newest Grandchild.

Bee, I am glad you had a lovely Christmas Day and I hope you are feeling a little better now. Hopefully they can tweak the dose if the side effects are really bad. It is so hard. I find my mood dips more than normal, but trying to plod on and take one day at a time. I allow myself some “Hippo” time (wallowing, though not in the mud) and then I go and distract myself with a walk or housework etc!

Amy, I hope you had a nice Christmas and your little boy had a big smile on his face. I hope you’re keeping ok too.

We just have to keep rowing together ladies, as we’re all in the same boat.

Take care. Sending love to you all and positive thoughts for a happy and healthier 2021! Xxx

Bee3
Member

Re: Paclitaxel buddies

Hi Jen,

I am so sorry to read that you are still struggling with neuropathy and I hope that something can be done to help. It's so unfair.

I am also sorry I have been quiet on here but I do think of all you lovely ladies often and really hope that your treatments work and you can live well. I haven't been too well. It really is hard when we try to be positive all the time when we are often struggling with side effects. I would give anything to be back to normal again.

I have had a lovely Christmas Day with my family and I hope you did too.

Wishing you all good things in 2021.

Love from Bee xx

Jennie60
Member

Re: Paclitaxel buddies

Hi ladies,

Hope you are all doing well. I'm still struggling with neuropathy. 

Anyway.......

Just want to wish you all a very Merry Christmas and a happy, as healthy as can be, new year. 

Love Jen 💕🎅🥳🤶xx

 

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope, 

Thank you for your kind thoughts. I'm getting my head round things now. I feel disappointed I couldn't just get on with it, but it's like my body is saying STOP! so its probably wise to listen.

I'm hoping the dog lead is the cause of your swollen hand and that you can keep going with the treatment. Keep in touch.

Thinking of you. Love Jen 💕xx

 

 

Jennie60
Member

Re: Paclitaxel buddies

Hi Bee,

Here I am going on about my side effects and it sounds like you are really having a rough time. I really hope you begin to tolerate the new meds soon. It's bad enough having cancer, but when the side effects make us Ill it stops us in our tracks! 

Thank you for your advice. I'm getting my head round things now. I couldn't leave it any longer, it was like the last chemo was a step too far and now I can't get the feeling back in my fingers and feet. They have said it's possible to continue on Paclitaxol as it's worked well for me so far, but I have to be showing no signs of neuropathy. Otherwise they will try other meds. I'm in their hands, have to wait and see. 

Thank you for being there. This forum is a god send when things get tough.

Thinking of you. Take care. Love Jen 💕xx

Jennie60
Member

Re: Paclitaxel buddies

Hi Amy,

Thanks for your kind thoughts, it's good to talk to people who fully understand. My poor husband just looks sick when things change!

Sorry to hear about progression, that's a word  we all hate now. But they have a plan and every 3 weeks sounds perfect. I hope you tolerate it well and can get on with enjoying life for a long time. Keep in touch.

Love Jen 💕xx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

I hope the side effects settle down very soon for you. I have a lavender heat pad which I pop in the microwave and place on my hands. It’s very soothing, so maybe try one on your back and tummy. The beautiful smell is a distraction, so it’s just a thought.

Sending positive thoughts and hoping your side effects ease for you xxx

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy,

Sorry you had a bit of growth whilst off treatment, but this new drug should put it back in its place and show it who’s boss! Every 3 weeks means you will get more of a breather too.

Sending positive thoughts to you. Have a relaxing weekend xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

I think you’ve done brilliantly having 19 treatments of Paclitaxel. You had positive scan results last time, so hopefully it has shrunk them even more. Three weeks without treatment will give your body a break and then you can move onto your next treatment. I totally understand how you feel because I am not sure if a 20% reduction in treatment will make a big difference to my symptoms. I’ll have to see what happens over the next week or so. I am seeing my Oncologist on Wednesday because my right hand is a little swollen. Not sure if it’s the start of lymphodema or I’ve had the dog lead wrapped too tight around my hand! Hoping it’s the lead!

I wish you positive results from your latest scan and a relaxing weekend xxx

 

Bee3
Member

Re: Paclitaxel buddies

Hi Amy,

I am sorry that your latest scan showed a bit of growth. Good luck with the carboplatin and hope it works for a few years with few side effects. Every three weeks sounds brilliant too. Your life will be more your own without the constant blood tests and appointments. 

Take care xx Bee

Bee3
Member

Re: Paclitaxel buddies

Hi Jen,

I am really sad to hear your news but thank goodness you are stopping the chemo. You don't need the neuropathy to become permanent. What a horrible thought. Another treatment will be there for you so try not to worry. Impossible I know.

Don't worry about missing out on a few weeks of treatment as it will be nice to have a break over Christmas. I waited 5 weeks before I started my new treatment. If your hospital is anything like mine they will have no spare capacity in the chemo unit so that was the reason for  2 weeks of my delay. Could you ask if you can be booked into the unit in four weeks time so that you already have a place when they decide what your treatment will be?   

I had my herceptin and Vinorelbine last week and this week I had a second dose of Vinorelbine. I have felt dreadful since having it with cramping pains across my tummy and back. I have been unable to do anything too, so lethargic. I keep hoping I will feel better and today I did manage a bath but had a bit of morphine sulphate to help. I read that this was one of the less common side effects of Vinorelbine. Lucky me!

Hope you can talk to someone in your team to reassure you.

Thinking of you. xx Bee

amyc
Member

Re: Paclitaxel buddies

Sorry to hear that Jen, but if there’s a risk of permanent damage then it sounds sensible to try something else. I know it’s scary though. Do you think you’ll get your results before Christmas?

I had two months off treatment and my latest scan shows a bit of growth (which they were expecting really) so I am starting a new treatment, carboplatin, next week. I’ve read some good things about it so I’m hoping it’ll work wonders for me. It’s every three weeks, so I should feel like I’m getting a bit of a breather too. 

Hope everyone else is doing ok xxx 

Jennie60
Member

Re: Paclitaxel buddies

Hi ladies, 

Hope you are all well. All change for me.

My neuropathy has got worse this week. 19th chemo last Monday and no treatment offered for neuropathy so I thought I could  carry on. Wrong!! Really painful feet and fingers ever since! I had an oncologist call this morning and they have decided to stop the chemo. Incase neuropathy becomes permanent. I feel sick about it. It's worked so far, I'm scared of not having treatment. The plan is to have a scan before Christmas and then discuss treatment options after results. Could be 3 weeks without treatment, but no choice it seems. Hope you dont mind me sharing, I know you all understand I'm feeling down.

Love Jen x

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

Christmas is a special time, especially when you’ve got little ones around. Our Daughter is getting excited 🎅🎄and that puts us in a nice Christmassy mood.

I am hoping the 20% reduction helps. I had to mention it to them as my hands were becoming really painful. My feet have eased off slightly and I still wear my ice socks for treatment. I now have ice wraps for my hands too. I’ve been assured that it’s still very effective with a 20% reduction. Wow! nearly 19/24, you’re nearly over the line! I am just behind you with 15/24 on Wednesday. As far as I know, I haven’t got a week off, but hoping the 20% takes the edge off it in time for Christmas Day. Ask them to prescribe something for the pain Jen. They won’t stop your treatment, but they can give you something to help.

Take care and stay positive too xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

Good news that your treatment has started again. The tiredness will be your body adjusting to the new drugs, but I’ve heard great things about Herceptin. I hope the groggy effect reduces, as your body gets used to the new drugs.

Take care and have a relaxing weekend xxx

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope,

It's good to hear you have been getting into the Christmas spirit. I enjoyed having my little granddaughter here today. She was so excited to help me put bits and bobs of decorations around the house. We plan to do the tree tomorrow, doing that with a 3 yr old would have been a step too far!

Sorry to hear your neurothapy has got worse in your hands. Mine has too, but more in my feet. I've dug out my surgical socks from 3 yrs ago to give me some support, I find they help a bit along with the ice socks, which take the edge off when all else fails.

My chemo has been reduced by 20% too, but I think I will ask if they can prescribe some meds to help with the pain I'm beginning to get now. Ive been afraid to ask as i dont want the chemo to stop, number 19 on Monday out of 24. I must admit I'm looking forward to my week off at Christmas!

I hope the reduction in treatment helps.

I hope you have a restful weekend, stay positive and well. Jen x

Jennie60
Member

Re: Paclitaxel buddies

Hi Bee,

It's good to hear you have started your new treatment. I expect it will take a little while to get used to it but really hope you feel well and ofcourse hope it works for you. 

Enjoy putting up your tree when you get it, we will do ours tomorrow I think. It's one we take down from the loft each year and is always tricky to put together. I usually do it with the help of wine, but as that's not an option any more chocolate will have to do.🤔

Enjoy the rest of your weekend 

Jen x

Bee3
Member

Re: Paclitaxel buddies

Hi Alwayshope,

Hope you enjoyed decorating your tree. I am hoping to buy mine this weekend. 

I had my treatment on Wednesday after 5 weeks of no treatment. It was such a relief to get started again, although I have felt groggy and tired since. I thinks it's because I'm sitting around and not doing much. Think I need to go on a walk soon! My new treatment is herceptin and vinorelbine. Really hope they work.

Wishing you all a lovely weekend with no horrible side effects.

xx Bee

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

I hope you had a nice birthday. Happy belated birthday wishes 🥳 

I am not sure if you have started your new treatment yet, but if you have, I hope it went well for you.

Been missing for a couple of weeks, as I’ve been busy working from home and trying to get organised for Christmas! We have the in-laws round on Christmas Day, so just the 5 of us. I always see my Auntie and cousins on Christmas Day too, so I’ll still be able to visit them later in the day. I’ve really missed seeing family, as I am sure you have too.

Hope you’re keeping well. Have a relaxing weekend 😊xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Amy,

Great news that everything is healing well 😊 your surgeon sounds like a cracker and it definitely helps! Physio should do the trick with increasing your arm movement. I had lots of physio and my range of arm movement is great now. 

I hope you now have more of a plan on what treatment you will have next. I always feel a bit more settled once I know. I’ve had 14/24 of Paclitaxel now, but they are reducing the dose by 20% from next week, as the neuropathy has increased in my hands. 

Hope you’ve had time to make some Christmas cards with your Son 😊🎄it’s a special time of year and I was singing along to Christmas songs last weekend when we put our tree up. We’d already put all our other decorations up, but left the tree until last.

Have a relaxing weekend and take care xxx

 

Bee3
Member

Re: Paclitaxel buddies

Hi All,

Hope the decorating has gone well.  I will get my tree and start doing mine next week. It's my birthday at the end of November so nothing Christmassy happens until after that in our house! 🎄

I am glad that your surgeon is pleased with how you are healing Amy. Hope you sort out the movement in your arm. I still do the arm exercises that I was given in 2012 when I had my lymph nodes removed. 

Wouldn't it be wonderful if we could all change our stories and be cancer free. I really hope that it will become like having a chronic condition that we can live with.I bet it was nice to have a jolly person. The way that we are spoken to and treated can have such an enormous impact on us. I wish that all oncologists had been patients before so would have a bit more understanding.

It's good you have a team discussing your next course of action and that you will have a CT scan to help their decision making. What would you prefer to have next? I haven't heard of Carboplatin so I will look it up in a moment. Hope the new oncologist will be a good one for you. 

Enjoy the card making with your son. I used to love doing things like that but my children are too old now. In fact my daughter very proudly announced a few years ago that she was never going to make a home made card again!

I've had to do a bit of creative thinking with the bubbles to have the Christmas that I want. Hope you have the one that you want too. I would be happy to have only my bubble but it would upset other members of the family so I can't!

I have my new treatment next Wednesday. Had to go in for a Covid test this afternoon. Really hope its negative as I had such a wait for this appointment I dread to think how much longer I will have to wait if I do have Covid.🍀🤞🙏

Hope everyone is not suffering from side effects and that you all have a lovely weekend.

Take care!

Bee xx

Bee3
Member

Re: Paclitaxel buddies

Hi All,

Hope the decorating has gone well.  I will get my tree and start doing mine next week. It's my birthday at the end of November so nothing Christmassy happens until after that in our house! 🎄

I am glad that your surgeon is pleased with how you are healing Amy. Hope you sort out the movement in your arm. I still do the arm exercises that I was given in 2012 when I had my lymph nodes removed. 

Wouldn't it be wonderful if we could all change our stories and be cancer free. I really hope that it will become like having a chronic condition that we can live with.I bet it was nice to have a jolly person. The way that we are spoken to and treated can have such an enormous impact on us. I wish that all oncologists had been patients before so would have a bit more understanding.

It's good you have a team discussing your next course of action and that you will have a CT scan to help their decision making. What would you prefer to have next? I haven't heard of Carboplatin so I will look it up in a moment. Hope the new oncologist will be a good one for you. 

Enjoy the card making with your son. I used to love doing things like that but my children are too old now. In fact my daughter very proudly announced a few years ago that she was never going to make a home made card again!

I've had to do a bit of creative thinking with the bubbles to have the Christmas that I want. Hope you have the one that you want too. I would be happy to have only my bubble but it would upset other members of the family so I can't!

I have my new treatment next Wednesday. Had to go in for a Covid test this afternoon. Really hope its negative as I had such a wait for this appointment I dread to think how much longer I will have to wait if I do have Covid.🍀🤞🙏

Hope everyone is not suffering from side effects and that you all have a lovely weekend.

Take care!

Bee xx

amyc
Member

Re: Paclitaxel buddies

Hi everyone,

Hope you are all doing ok. It’s very chilly here today!

I saw my surgeon yesterday and he is pleased with how everything has gone and said I was healing well. They are referring me to physio because I’m struggling a bit with movement in my arm but otherwise am doing pretty well. I liked how the surgeon described it yesterday, he said they had decided to do the surgery to ‘try to change the story’ - let’s hope so! He is a lot more jolly than my oncologist who never gives any information other than what is absolutely necessary. 

There is apparently a bit of debate about whether I should now have radiotherapy or go back onto chemo for a bit first (a new one - carboplatin) so I am having a CT scan so they can see what’s been going on the last six weeks since I’ve been off paclitaxel. I’m meeting a new oncologist on Tuesday (the radiotherapy specialist) - that will be my fourth one! 

My son has really cottoned on to the idea of Christmas this year so I have ordered a load of craft materials so we can make cards and decorations. Very confused about these family bubbles over Christmas - our immediate family is made up of eight households so I’m not sure how we can choose who we’ll see, maybe we’ll just keep to ourselves! 

Hope everyone has some nice weekend plans regardless of tiers and the cold weather! 

Take care

Amy xxx 

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

That’s good news that they’re reducing the dose slightly. Think I may have to do that if my side effects increase. I am glad you’re having Christmas week off, means they’ll be no rushing round to the hospital and you’ll feel well. They haven’t mentioned that to me, but I have a telephone appointment with my Consultant on 9th December, so I’ll see what she says then.

Have a lovely relaxing weekend with minimum side effects. Love and positive thoughts xxx

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope, 

Sounds like fun putting up decorations with your 9yr old daughter. I'm going to hopefully have my 3yr old grandaughter here when we do ours. Children bring the most joy. 🥰

I've had a busy day. Bloods, flu jab appointment, bone jab appointment and oncologist call.

It's been decided that as I'm on 100% dose they will reduce it a little to hopefully help with side effects. Also because I won't be finished til January they are giving me Christmas week off! 

No treatment on the 21st December. 

I'm happy with all of that. So onwards and upwards. 

Stay well and positive. Enjoy every minute of the decorating. Love  xx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

Yes, my feet sometimes feel spongy, or certainly my left one does. My nurse mentioned the spongy feeling to me on Wednesday, so it must be common with neuropathy. Definitely mention it to your Oncologist. Mine comes and goes, but if it gets any worse I will mention it to my Oncologist too.

Number 17, wow! You’re doing so well Jen and it is doing it’s thing! You carry on going. It will be number 13 for me next week and it is whizzing by. 

Trying to get a little bit organised for Christmas now as it’s only 5 weeks away! Our 9 year old Daughter is so excited. Think we’re putting our decorations up early this weekend to bring some joy 😊Sending love and positivity xxx

Jennie60
Member

Re: Paclitaxel buddies

Hi Alwayshope,

I think I will follow your advice of ice socks during treatment and warm socks at home. I can but try. 

Your toe sounds quite painful, I hope that improves for you soon. It's bad enough with numb toes! 

Do you ever feel a little off balance with it? Sometimes my feet feel so spongy I'm not sure I'm walking well.

I have a call from the oncologist tomorrow so will be telling him about it. My next treatment is my 17th. Regardless of the side effects I'm hoping to keep going as it has so far been effective.

Take care. Stay well. Love x

 

 

 

Jennie60
Member

Re: Paclitaxel buddies

Hi Bee, 

You are right about it being a rollercoaster ride. Thank goodness we have this site where we can find others to help us along the journey. 

It's good news about your biopsy, as new treatments are available to you and trials are there for the future. 

Stay positive and ready to take on the next course of treatment. I'm sending you positive vibes for good results.

Love x

 

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Jen,

Glad your toes and hands are a little better this week. Each week seems to be different.

I keep my feet warm at home, but I keep them as cold as I can with the ice socks when having my chemo. I even placed my hands on ice blocks yesterday. I am trying to achieve the same effect as the cold cap for scalps. Although it won’t completely take the neuropathy away, it does take the edge off it. My left toe is not as sore now, but I will lose my nail at some point, as it is bruised. I had to do something as it had started to bleed a couple of weeks ago. I hope any other side effects are not too bad for you.

It’s so helpful to chat with you ladies on here because being in the same boat, you all understand.

Take care and have a relaxing weekend. Love and positive thoughts xxx

Alwayshope08
Member

Re: Paclitaxel buddies

Hi Bee,

Glad you have your results back. That explains a lot then, with it having changed receptor status. It’s good that they are so thorough, now it will open up many more treatment options. I’ve heard that Herceptin is a very effective treatment and there seem to be a lot of women on that targeted therapy.

I am pleased that it has opened up so many more treatment options for you Bee and I feel really positive for you that this will put it in its place! Hoping your appointment goes well on Saturday and sending love and positive thoughts to you xxx