New here and been struggling, especially with p... - My Ovacome

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New here and been struggling, especially with paclitaxel

Callipygian profile image

Hi everyone, I'm a total newbie. Diagnosed stage 3c ovarian 3 months ago (came totally out of the blue). Have had M.E. for many years, but was relatively well for first nine months of of lockdown (I live on my own, and kept sane by growing vegetables and keeping busy and positive). Then, after acute pains for weeks and finally seeing a G.P. in person after 4 G.P. phone diagnoses ranging from kidney stones to 'grumbling appendix', was sent straight to hospital (my stomach was the size I was when I was 6/7 months pregnant), had a scan, was told it was cancer. Since then, 3 rounds carboplatin, shrinkage minimal so no op possible, then 2 weeks ago, paclitaxel was added to the mix. I ended up in hospital with bowel problems which started the day after chemo. It was like constant labour pains. I had been phoning cancer line for a week and they simply told me to pile on the laxatives. Nothing. Finally, G.P. told me to go to A and E and I was admitted. Out after 3 days. The exhaustion and muscle pain is really bad, as is peripheral neuropathy. I'm also so unsteady and dizzy. Saw a registrar yesterday (had to be taken in a wheelchair I'm that debilitated), who said I have to have paclitaxel plus carboplatin next week, as there is no other option. She also said that there is no treatment for the pain or the peripheral neuropathy. I had spoken to the Macmillan helpline nurse over the weekend, who said there are things that can be done for the pain and the neuropathy. Registrar yesterday said not to up my pain killers for the pain?? I just feel like there is no engagement in discussing options for the patient (certainly in my neck of the woods in North Lancashire) , and that if you are one of the unfortunate ones that reacts badly to the treatment, then tough, you have no other option. Has anyone else felt like this? And has anyone else had a really bad reaction to paclitaxel? Sorry to sound so negative for my first post, but I really have been struggling, and I'm usually so positive. I'd really appreciate hearing about other people's experience of paclitaxel and any suggestions (apart from rest) which could perhaps help. Thanks so much.

52 Replies

Hello and as we say here often, welcome to the club no one wants to join. I am so sad that you are having this experience but this is indeed the place to find support, comfort, empathy and advice. The women here will provide you with information, hope and alternatives to what you are facing. Their advice and strength have carried me countless times through the darkest days and though I've not met one of these amazing ladies, I feel their presence with me as I make my way forward.

Like you, I am 3C and am currently nearly 4 years post treatment - I had surgery first and then chemo (Carbo and Taxol) so my experience is a bit different from yours, but can offer the following...

There is indeed treatment for pain and neuropathy. That your current NP or Onc. cannot offer one seems wrong. Additionally, there are alternatives to Carboplatin and Paclitaxel for treatment and I'm quite surprised that your GP has not shared these with you. Cancer care is one areas where palliative options (relieving pain and helping one carry on with life as "normal" as possible) abound and there should be multiple options from which you can choose.

You say little about age/complications/what they did to relieve your pain in hospital, etc. so cannot offer any specifics, but do suggest you get a second opinion (soon) on your treatment protocol and then can consider whether or not your current GP is offering you the care you desire. If you cannot find one on your own, I am certain the ladies here will chime in with options.

This journey is not an easy one, but there are a plethora of options these days - both for treating the disease as well as for alleviating the impact of side effects. There are ways to manage constipation/bowel blockages, nausea and pain - both chemically as well as organically. And there is help should you be struggling emotionally with the burden of this disease.

Please continue to use this forum for support and advice. The ladies will chime in shortly, no doubt, with more specific and helpful info. And remember, you are not alone - we are here to listen, to empathize, to share and sometimes just to hold your hand virtually.

Thanks so much for replying, SophiamariaA. The treatment at the hospital helped my pelvic pain, but when I got home, it was the pain in my muscles and joints which was so bad that I was crying with it. Today, this has eased a bit and is more low level, but the exhaustion is still very bad.I did tell this to the oncology registrar, but to no avail. I also asked about PARP inhibitors (which I am eligible for having had some shrinkage from the carboplatin), but she would not enter into a conversation about them. She said they were for further down the line 'possibly', and that now as not the time to discuss them. Certainly here where I live, oncology will not entertain any discussion concerning treatment which deviates from the management plan i.e. everyone is offered 6 cycles, 3 carboplatin with scan after 2nd cycle, followed by carboplatin plus paclitaxel, with scan after 5th cycle. case conference after 2nd and 5th cycles. Even though I have had severe side effects, I have to carry on with their plan, as there is no alternative offered. I am seriously thinking of possibly asking my G.P. for a second opinion referral, but I don't think they're obliged to do that. My oncologist is married to one of the G.P.s at my surgery incidentally.

Oh dear. You are legally entitled to a second opinion. You do not have to be in this dire a situation. Can you find a doctor who can function as control central to coordinate treatment options and who is connected to the cancer clinic or hospital where you are getting chemo? Whom you trust?

For muscle pain there are local novacain patches as well as topical anti-pain gels. If you are taking paracetemol for pain that contributes to constipation. Neuropathy...you can try glutamine powder, massage and Arnica Montana gel and homeopathic granules of phosphorus and hypericum.

Most cancer treatment centers offer counseling support to help you cope mentally and physically. There are methods to help you calm the pain and fear so you can as we say here put on your big girl pants and fight.

This is a scary and isolating disease but can ultimately be manageable and your being eligible for PARP is encouraging.

Carbo taxol does work but there are other combinations they can try if this continues to be insupportable. Stay strong.

Big hugs from paris.

Bonjour Rubacelle.

I'm afraid that over here you are allocated a doctor and a named cancer nurse, and that's it. I have no idea whether any of the other consultants would be any different, unfortunately.

Yes, I've avoided paracetamol and co-codamol because I know they'll affect my bowel (which, touch wood, seems to be functioning now). My only hope for alternative pain relief is my G.P. I'm actually going to write to them, as I know which specific G.Ps I trust.

I did ask about alternatives but the registrar just would not discuss them.

Yes well but they dont have any alternative. I use homeopathic because that's it. I save paracetamol for rare super pain yo save the kidneys and neuropathy they have a drug only 50%effective and they don't prescribe it. In france I have a dedicated and bright pharmacist who wants to help who wants to find something that helps. the homeopathics cut secondary effects in my case but don't eliminate them. You can ask to reduce taxol dosage. They did that with me the last carbo taxol I had before surgery. You can research glutamine powder also. What many of us on this site have learned is we have to be partners in the process. You are the client. They work for you. You have the right to question.

While this is exhausting and scary you will learn how strong you are and will tap into resources you didn't know you had.

Good luck hugs from paris

mupash profile image
mupash in reply to Ruebacelle

HI-

DO THE ITEMS YOU MENTIONED ABOVE HELP NEUROPATHY DURING CHEMO OR AFTER DAMAGE IS THERE? ALWAYS SEARCHING ...

THANKS,

LEE

Ruebacelle profile image
Ruebacelle in reply to mupash

I take them all the time was off chemo for 4 months start back up w carbo Friday and took them while off and will take them while on.

mupash profile image
mupash in reply to Ruebacelle

THANK YOU!

Perhaps you need to seek a second opinion. You are entitled to do so and another pair of eyes looking at your history can be very useful. I had a 20% dose reduction of taxol because of peripheral neuropathy.

I think most of us had carboplatin together with taxol from cycle one, not after three cycles.

Perhaps do some research as to the best cancer hospital in your region and ask to be referred there for a second opinion.

All the best.

Thank you January-2016-UK. I'm in the North West (North Lancashire) and I'm hoping that someone will read this and be able to recommend someone else I could ask to be referred to. I'll maybe do a new post and ask people. Thanks again.

Hello, sorry to hear that you are feeling so much pain. I had awful bone pain with carbo/taxel and a nurse came on a motorcycle to my house with very strong cocodamol which helped. He would have given me oramorph if I had needed it. I think you should ask again..refuse to see anyone but the consultant. Sometimes I am afraid, you really have to agitate to get what you need. They are right about the neuropathy but it will get better once you finish treatment xx

Callipygian profile image
Callipygian in reply to Lyndy

Thanks so much for taking the time to reply, Lyndy. I have decided to contact my G.P., as I am feeling so ill. Pain is very bad and I can hardly keep my eyes open I'm so exhausted. Two weeks on I shouldn't still feel like this, surely? I can't imagine being able to have patient transport take me the 20 odd miles for chemo, never mind have the chemo itself again next Tuesday. I'm just not physically well enough.

Oh how I feel for you , I was diagnosed 2019 ,stage 3 c hgsoc , I had three cycles of Taxol and carbo ,then three more carbo before surgery , I was bad with first three ,pain in legs and feet , extreme fatigue and weakness .Can you call you're chemotherapy unit ,I found they were better than Gps ,mine had me straight back for examination ,bloods etc , prescribed me oramorph for the pain , I found it eased and I felt better after the second week so I was able to have my next chemo.

As for your oncologist ,get rid ,you deserve better ,never heard of just carbo being given for first line treatment ,you can ask for a reduction in dosage , I did when having second line treatment.

Make use if your chemo unit ,they are usually a mine of information.You should have a cancer nurse specialist ,if not ask why not ,if you have phone her.Hope you soon feel better.

Cheryl xx

Hi Fendweller,

thanks so much for replying. I was at the chemo unit on Monday when I saw the registrar. Nearly killed me getting there (20 odd miles away), as I'm so utterly exhausted, and had to have a wheelchair. Bloods were taken (at my insistence) , in case of anaemia, but HB was 104, so their normal.

I've been emailing the cancer nurse specialist (they don't pick up the phone), who just follows what the doctors say. I apparently will be given a reduction in dosage for the second taxol. Problem is, it's week 3 and I still feel really ill with pain and exhaustion. I don't feel I'll be well enough to even get to the chemo centre next Tuesday, let alone have the drugs again.

Presumably I can't have oramorph because of ending up in hospital with the bowel problems? Btw, with the carboplatin. the first 2 weeks were pretty dire, but I was much better by the third week.

Try to get to your next chemo if you possibly can , I have gabapentin for my neuropathy ,for constipation I have movalat , make sure you drink three litres of water daily ,and hard though it seems I tried to walk a short distance every day , sometimes just a few laps round the garden ,but it helps ,good luck with your treatment .Cheryl xx

Thanks Cheryl!

How bizarre that the treatment in North Lancashire is different to that in the next county, Cumbria, where I live. I was diagnosed at stage 4 high grade and told that the recognised and most successful treatment was 6 rounds of carbo/taxol (taxol is the short name for paclitaxel) from the outset; 3 rounds before the scan and 3 after. I reacted badly to taxol and was given large amounts of steroids and antihistamine during each chemo session which meant my body could cope with it. Sometimes I felt very poorly afterwards but this passed after a few days and I consoled myself that the pain was the chemo battling the cancer!

My GP had no involvement with my cancer treatment but was very good at giving me painkillers. The cancer nurse I was given at the hospital was also very helpful. I was also told there was no treatment for peripheral neuropathy but that it often improved after treatment was finished. (It has improved but not gone completely).

At my request the GP referred me for a second opinion at Christies at Manchester and, coincidentally, the cancer nurse referred me for a second opinion to the Northern Cancer Centre at the Freeman, in Newcastle. The result is that I am on a parp from the Freeman (both hospitals offered it but the Freeman is closest to me).

I would recommend you to try to cope with the last sessions of taxol as it does seem to work so well, but I would certainly ask for a second opinion. I understand that your GP has to refer you if you ask.

So sorry you are having such a rough time of it. Sending love, hugs and prayers that you soon start feeling better. Al best wishes x

Hi Cumbrianlass5,

Thanks also for replying. I believe we're probably under the same health team, unless you are really far North? Morecambe Bay health authority stretches to Barrow, and all the chemo is done at Kendal now because of Covid, rather than Lancaster and Barrow. Operations are done at Preston. Perhaps you're nearer Carlisle (which I think is a different health authority) if Newcastle is nearish to you?

I'm unsure at what point I should ask for a second opinion. Presumably I should wait until the chemo finishes at least?

I have read in other posts that there is a professor at Christie's (I believe we can't name doctors in posts, only in private messages (but I've no idea how to do them - I'm a novice at this!)).

I have to have 2 more taxol plus carbo, and they do the scan after the second round of the combo, rather than waiting till after the third round (no explanation why). It's worrying that I was only on carbo for the first three cycles, as no-one else seems to have had that, but rather they've had the combination from the outset. Perhaps the consultant guessed I might react badly to the taxol, but I can't see how she would have known, unless this has happened with other patients with M.E.?

There's so much to take in, and I'm so grateful for the info that everyone's giving. It helps in making an actual informed choice about things.

Yes I am near Carlisle and was treated there. I got a second and third opinion after the end of my first six cycles of chemo. I think you should do it as soon as your chemo is finished. They scan after the second round of the combo because it can take a fortnight or more to get the ct scan result analysed and if there has been enough shrinkage to allow an operation they will want to do it as soon as possible after the last chemo. I am no doctor but that is what they led me to believe.

I have heard great things about the professor at Christie's and got my second opinion from her. Unfortunately she also agreed with the Carlisle-Gateshead team that

mine was inoperable. (Carlisle gives the chemo but Gateshead does the operations).

Carlisle proposed a thee-month watch and wait plan, which felt like no plan at all to me, and that is when I got other opinions and went to the Northern Cancer Care Centre at the Freeman at Newcastle.

Keep well informed about your rights and your treatment and write down questions for your oncologist and a note of what he or she says. When you are on chemo your mind gets a bit "dull", or mine did.

Thinking of you and sending all the very best wishes that your treatment is both bearable and successful x

Hi Cumbrianlass

So would you not recommend the female consultant at Christie's? It was actually a male professor who specialises in ovarian cancer that I read about. I have attended the Freeman for a neurology referral before now, and they were head and shoulders so much better than our hospital here.

Oh no I did not mean that. I hear only good things about Christies and the Freeman. I mean that I accepted I was inoperable after I heard it from and Christies. I had had some doubts before Christies confirmed an operation was not possible.You might be interested to know the Freeman is taking over running of the new Cancer Centre which is just about to open at the Cumberland Infirmary at Carlisle. (It may already be open.) The onc did say if we ever had a face to face he might be able to do it there. I dont know if it would be nearer to you than Newcastle.

Best wishes and lots of love x

So sorry for misunderstanding what you said! I think it was because you decided to go to Newcastle, but that's nearer for you, of course.

I think that Carlisle and Manchester are about the same distance from Lancaster. I don't drive or anything, so have no idea which is quicker. I often have to use patient transport to Kendal.

I fainted yesterday (something I never do!), phoned the helpline and was told to go straight to A and E after they'd consulted with the oncologist. She thought it might be mild neutropenia. It wasn't, but my neutrophils very extremely low. I was given antibiotics. I now have to see the consultant on Monday. I reckon she's going to stop the chemo. I'm going to ask if I can have weekly paclitaxel, which the helpline told me about. Think I'll do a post asking people about that. The hospice community team are ringing shortly, so must go (they got in touch yesterday and sounded so nice).

Best wishes and love to you, too. and many thanks. x

After each chemo session I was given injections to give myself in my stomach to build up my immune system again, including neutrophils etc. Are you not getting these? I presumed this was standard treatment x

Hi, yes, I inject Filgrastim for 5 days after each chemo.

Yes that's the stuff. I used to inject for 7 days. I guess all health authorities are different. You would think they would all be the same in England! x

Hi, I’ve been on Carb/taxol twice over the last 4 years. In 2017 my ca125 started at over 16000 and dropped to 9 after 6 three weekly sessions. In 2019 ca125 was 4500 and after 18 weekly chemos dropped to 4 so the Chemo does work. I didn’t have any side effects as such other than the 18 weekly session doesn’t give any recovery time. We all have bowel problems probiotics could help. You must keep eating. I have neuropathy I’ve read others have had their dosage reduced to help with this but my Onc didn’t mention this to me. I too live in Lancashire and my care has been good although I’m waiting for my stomach to be drained, did you have yours drained? My ca125 is now 1500 so I’ll be going through it all a third time. I was diagnosed like you at 3C and I didn’t think I’d last 6 months with ca125 of 16000 but here I am 4 years on and still fighting. We don’t ever give up. Hoping you feel better soon. X

Callipygian profile image
Callipygian in reply to Elsp1925

Hi, thanks for replying, my bowel problems are ok now. It's the pain and exhaustion which are badly affecting me, more than 2 weeks after the chemo. I'm assuming that you're South Lancashire, or maybe have a different consultant, as I couldn't describe the care here as good at all, knowing what I know now from how other people are treated. I am eating well, btw. Luckily my appetite has not been affected. Thanks again!

Hi, sorry to hear your having such a rough time, I am in Nottinghamshire and sounds like a very different experience and I was stage 4. I had just one dose just carbo then the double carbo taxol but I had to have reduced dose to 80% as I was not coping too well and was very sick and ended up back in hospital. but the next time they did give me extra antisickness pills etc which helped a lot. It's still not a great experience! I responded well and was then offered the ultra radical op which had not been mentioned prior to the ct scan after 4 sessions. Plus 3 more chemos after op and now on olaparib so things can change. I agree with others get a second opinion. Do try to get to your next session you have another week and again your body can surprise you, I put one off as I felt unwell and was so cross with myself as I felt OK ish next day then had to wait a bit longer to get another appointment! Hope this helps take care and keep fighting ❤ keep asking questions you are worth it!!

Hi there , I had problems with taxol from round 1(combined with carbo) . It was like really acute irritable bowel , contractions and vomiting that wouldn’t stop , reached a peak about round 3 , when I was in hospital for 2 weeks . They really sorted it out, I had to miss one taxol round but then had pump to control vomiting and pain which I went home with and local nurses came everyday to sort , I was able to finish chemo , but on reduced dose ,but still good response. The taxol whilst stopping cancer cells also affects fast growing cells of bowel, hence problem. But can be sorted by right treatment, I had a brilliant young doctor who wasn’t from oncology but still got everything organised . You need help , I felt absolutely dreadful like you when it was happening. I know our local hospice helps with things like this , cos I was told they would have had me in for a week to get it under control . Maybe your Macmillan can help .

So hope you feel better soon, I remember exactly feeling like you

Jennifer

Callipygian profile image
Callipygian in reply to Rankij11

Thanks Jennifer. I am going to write to my G.P. (rather than ring the receptionists who'll insist I'm triaged by a nurse) and ask him to refer me to the local hospice, as it has to be a health professional. You can't self refer. I'm also going to ask him about pain relief for the intense muscle pain.

Rankij11 profile image
Rankij11 in reply to Callipygian

Hope all goes well, they’ve got lots of different pain control and anti spasmodic drugsI would like to know how you do, but not to hassle you.

🤞

Hi, I find your post really upsetting, your being treated very badly and I'm afraid your going to have to get pro active. Your onc sounds completely useless and uncaring, they should be prescribing pain relief for your joint pain, helping you with bowel problems and listening to you when you describe problems. You are totally entitled to a 2nd opinion regarding your treatment at all stages and your also entitled to being treated in a more caring way. Your GP doesn't sound very good either and conflicts with your best interests. I hope you get help soon. The Christie in Manchester is a fantastic Cancer Hospital, you should at least be able to get a zoom/phone call with them and if your up to it transfer. All the very best Sue xx

Callipygian profile image
Callipygian in reply to SUE7777

Hi Sue, thank so much for the support. I honestly have tried to be pro active. I take typed notes to the rare face to face consultations. I try to have my daughter take me. We are both intelligent people, and yet I come away frustrated and upset from them. Bowel problems are now under control, but it's the utter exhaustion and muscle and joint pain (and now depression also) which I need help for. I am in the process of actually writing to my G.P. surgery, so I get to see a G.P. I trust, and who is not the G.P. who is the husband of the oncologist. Are you with the Christie? Can you (by private message) recommend an oncologist there?

SUE7777 profile image
SUE7777 in reply to Callipygian

Hi, I'm sure your being pro active and of course your doing your best. I'm sorry I'm not at the Christie, I live in London. Professor Gordon Jayson is at the Christie and is very renowned and seems a lovely caring man. Changing GP is definitely a good idea if only for your peace of mind. I hope you get some help soon and I'm sorry I can't be more helpful. We're all here for you now. All the best Sue xx

Callipygian profile image
Callipygian in reply to SUE7777

Thanks so much Sue!

Dear Calli. You have had such great advice from other ladies already there is not much else to offer. My first load of chemo knocked me for six and I was very fit and active right up to diagnosis. I am in awe of ladies who live alone and deal with their treatment with such courage. There have been times with aching joints, fatigue blah blah that I couldn’t do anything let alone deal with everything else like you do.

I don’t understand why you are so reliant on your doctor. I only ever contact mine for prescriptions. I used to go straight to the help line on my « cancer club card » they gave me when I started chemo.

I can imagine that the thought of going to your GP to ask fir a second opinion is causing you great stress. I hate doing stuff like that as I’m always worried about offending someone. Your situation is worse because it all seems a bit interwoven over there BUT this is YOUR health and YOUR life. You have to put any worries in your back pocket and speak up for yourself. Is there a GP in the practice you could talk to and confide in? If not I’d go straight back to the oncology team with my questions. Failing all that could you afford a private one off consultation appointment they are about £200.

Good luck. BTW you can private message by going to messages at the bottom of your home page. I think!!!!!!

Callipygian profile image
Callipygian in reply to JustKBO

Thanks so much for replying.

I am actually writing to my G.P. at the moment.

Btw, when I first phoned the cancer help line after my first chemo, they simply said 'You signed up for the chemo knowing what the side effects were', and simply dismissed my symptoms.

I've only phoned up once more, as I thought I was anaemic due to breathlessness and exhaustion, only to be told that was impossible, as it only occurred further on in later chemo cycles. When I had pre-chemo bloods, I was told I needed blood transfusions due to anaemia, and cycle had to be delayed.

The treatment really is dire here.

JustKBO profile image
JustKBO in reply to Callipygian

I am shocked to hear of that response from the chemo unit. There are kinder ways to be told that what you’re experiencing is part of the course. I had a similar experience when contacting my CNS in the early days. A colleague did a transfer to her and they were laughing at the fact I’d rung to give symptoms and was asking if they thought my cancer was coming back. I was hurt, deflated and then angry. I reported the incident- not angrily, but saying how hurt and unsupported I felt. She has never mentioned it but I have had dealings with her since and she was good. I try to hook up with one that I’ve got a better rapport with now even though she’s not my designated. Good luck with your letter.

I think you should phone your GP and ask for the palliative care/ Macmillan nurses to visit you or whatever else you suggest. I had the palliative care nurses- they were very good and were sent by my GP. Many of us have had poor registrars to cope with in oncology. Do you have a clinical nurse specialist at the hospital ? if not ask to speak to your consultant in person- try phoning his secretary. It is not acceptable to just leave you in pain. If you don’t get anywhere with this phone PALS at the hospital.

Callipygian profile image
Callipygian in reply to Neona

thanks Neona. I have just emailed my named cancer nurse and directly asked her to refer me to the local hospice team, and said I can't imagine feeling well enough next week to have chemo. Surprisingly, she emailed straight back and said she would. She also told me to phone the advice line, and amazingly I got a nurse who actually listened to what I said. He's gone off for advice from a colleague. He said to take paracetamol, but feels I should have separate codeine, despite the bowel problems. He also agreed that all symptoms (including the depression) were as a result of the paclitaxel, and it was a severe reaction, as it's unusual for this to carry through to the third week.

OvacomeSupport profile image
OvacomeSupportAdministrator

Dear Callipygian,

Not much more to add here as you have received some very helpful replies, but just in case you haven't already seen it, Ovacome has this information on how to obtain a second opinion, if that is what you choose to do. I hope that it will be helpful for you.

ovacome.org.uk/getting-a-se...

Best wishes,

Laura Nott

Support Services

Thanks very much Laura. I will read it now. Thanks also for this site! It's a godsend for people with ovarian cancer. Thank you.

Hi there

So sorry your feeling so poorly,it is horrible.Like others I had carbo and taxol for first line at the start of last year.I had extremely painful bone pain in legs,feet,arms and hands.After speaking to the hospital they gave me Pregnabolin to take at the times the pain was too much and it did help although it did make me quite drowsy.

I used a good quality high strength cbd oil as a supportive during chemo aswell which did help and would be worth having a think about using,it has no interaction with the chemo drugs.Something else that greatly helped the neuropathy was L glutamine capsules which you can get at Holland and Barrett.I started taking 2 or 3 a day a couple of days before chemo day until a couple of days after it.I definitely noticed a difference when I took it.

But again I agree with the other ladies you need to ask your oncologist for a second opinion,they cannot refuse you,you are entitled to it.

I really hope you start to feel better over the next few days take care of yourself xx

Thank you,

Everyone here is so lovely, and so supportive.

I already take 3 x 5mg pregabalin a day because of the M.E., but the registrar insisted I must not up the dosage. She wouldn't explain why, and offered nothing else.

I will search for cbd oil, but I'm unsure what a good quality make is. I believe there are quite a lot of 'sham' ones out there.

I'll also try the L glutamine. Anything which might help will be worth it.

I'm still waiting for a callback from the cancer helpline re any other pain relief for the muscle and joint pain.

Cbd oils I have used are online from Bristol cbd or The Tonic Tribe cbd x

Back to square one. The cancer line spoke to the registrar, who said that I can't have anything but paracetamol due to my bowel issues. I'll have to hope that I see the Hospice team sooner rather than later.

JustKBO profile image
JustKBO in reply to Callipygian

Callli I sort of agree with your registrar. Codeine based drugs cause awful constipation. Paracetamol is the best, safest pain killer. There is a brilliant painkiller you can get in France. I can’t remember it’s name but it seems to work really efficiently for chronic pain. RUBACELLE can you help me out with its name? I bet you could get hold of it.

Im so sorry, it really seems you are getting the run around. If you are able to seek out a second opinion you should. Where I’m at first line chemo is Paclitaxel and carboplatinum together. They have predictable after effects including neuropathy. That can all be managed. Good luck finding the help you need ❤️

Thanks so much everyone! I really need to rest now, so please don't think I'm rude if I haven't replied to all so far. You are a wonderful bunch of people, and I wish you all the best!

HI-

CARBO AND TAXOL AREN'T PLEASANT TO GO THROUGH BUT THEY ARE VERY

GOOD DRUGS. IF YOU CAN GET YOURSELF THROUGH IT, KNOW THAT YOUR STRENGTH WILL COME BACK WHEN YOUR TREATMENT IS COMPLETE AND YOUR HAIR WILL GROW BACK. AS FAR AS YOUR PAIN GOES, THERE IS SO MUCH AVAILABLE THERE IS NO REASON FOR YOU TO BE IN PAIN. CARBO/TAXOL ARE THE DRUGS OF CHOICE FOR FIRST LINE OC BECAUSE THEY ARE SO EFFECTIVE. TRY TO KEEP YOUR EYE ON THE GOAL AND GET THROUGH IT. IT DOESN'T SOUND LIKE YOUR NURSE OR DR. ARE REALLY LISTENING. CAN YOU GET A SECOND OPINION? I THINK YOU SHOULD INSIST ON IT.

FEEL BETTER,

LEE

Hello Calli, sorry to be so late!

So much has been said and how great the advice has been!

I am so glad that you say you are getting a referral to your local Hospice - it is the one thing I really wanted to advise you to do as you will be considered ‘palliative’ and therefore qualify.

I’ve had such amazing g help from my local hospice (St Helena, Colchester, Essex) and I hope you get the same from yours re pain relief, counselling, 2nd opinion advice, complementary therapy (now we aren’t so restricted by Covid).

I wish you the very best of luck for the future as you’ve had such bad luck up until now. Please do let us know how you get on.

Sending luck & hugs,

Iris 🍀🤗🍀🤗

Callipygian profile image
Callipygian in reply to Irisisme

Thanks so much Iris.

I spoke with one of the hospice community nurse team yesterday, and she took a few details. She's phoning again on Tuesday, and they'll arrange to actually come out to see me and explain what exactly they offer people.

I have an appointment with the oncologist on Monday. She wanted to see me after I had a fainting episode and was told by the advice line that she wanted me to go to A and E last Thursday. I was put on antibiotics, so no chemo possible anyhow next week.

I already have a counsellor from a local cancer charity, but unfortunately, often the appointment has fallen on my chemo day, and of course when I was I hospital I missed it.

Thanks again.

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