Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

@Sausagesforever that is funny with your friend! When I've been waiting for taxis, I've seen some monumental rows over the BB spaces but my taxi always appears before I've seen the conclusion, I'd love to see someone sulking off like that.

@Sausagesforever Steroids are pants, I agree. Moon face, insomnia, flushed cheeks, hard to swallow, they also used to make me eat everything in sight but now that this treatment is causing me so much nausea, this doesn’t happen anymore. Who know what my bloods will be like, hopefully they WON’T phone me tomorrow (no phone call means it’s all go for the treatment to go ahead).

I think seeing your friend in a Porsche would have finished this morning’s fool off. 😂 We are all prone to judging but to be so blatant about it, it is just damn rude and judgmental and presumptuous. Why is the older generation like this? Maybe I am just extrapolating here. I wish I had said I’ll trade you my stage 4 at age 54, widowed with a DS14 to support to whatever you have at age 70+ (grown up children if he has them and grandchildren).

@Fantasea Sooo close! Definitely try and get them to phone in the morning or at least give you a timeframe, so you don’t have to hover around your phone waiting for so long.

Hello, Can I join you all? I have posted on here before but not for a while. Short story melanoma spread to lungs. Immunotherapy not worked. 2 clinical trials not suitable but only after multiple trips to London and a collapsed lung caused by their biopsy. Latest scan shows biggest tumour grown from 3 to 8cm. Prognosis is I may make Christmas. I can't believe this it must be happening to someone else surely? I have sent my scans to the Royal Marsden for a second opinion (grasping at straws). Has anyone else tried this?

@saveforthat What horrible horrible news. I am so sorry and of course you can join. I’m from the US and my insurance requires me to only be able to use them for care but I would try anything and everything if I could. Go for the Royal Marsden. I understand just a bit about health care in the UK so hope I’m not out of line. Sending prayers and love.

@balkanscot I am not hopeful as I was firmly told at booking it would be 'any time' but I'm still going to try. I'm really hoping you don't get a call and your chemo can go ahead.

@saveforthat welcome to the lovely group that no-one wants to be part of, I'm so sorry you find yourself here. What a terrible time you've had and I hope the Royal Marsden can help. I had a friend who went there after her hospital had said there was no further options available and she had two further lines of treatment with them and a reasonably good quality of life in between. I understand what you mean about it all feeling as though it's happening to someone else.

I just wanted to say try swallowing your steroids in a spoonful of yogurt, will stop them catching in your throat, I'm a nurse and we use this method for patients who struggle with tablets. Hope it's ok to post. Xx

@PinkJ Thank you. I tried swallowing steroids with yogurt, with mixed success. At the moment my fail safe method is M&S strawberry milkshake. Just managed to swallow 5 steroids and an anti sickness (Granisetron) washed down with the milkshake, it worked.

@Enigma54 Whatever the case, I am rooting for you. My bloods must have been fine, I am currently sat in THE CHAIR, having swallowed 5 steroids &1 Granisetron. I forgot I can’t stand coffee at the moment when I ordered one when the snack trolley came around. 🤢

@PinkJ I didn't know that about yogurt, I struggle with the dry tablets too. Thank you for posting.

@balkanscot I'm pleased your bloods were ok and your chemo could go ahead today. Sorry about the coffee. I'm hoping the tea trolley is as well stocked as it was 5 years ago and cutbacks haven't occurred. I'm really hoping the side-effects aren't as bad for you this time around.

I rang the chemo unit this morning and asked if I could have a morning phone call on Friday rather than the 'any time from 9am to 5pm'. The receptionist went off to ask and returned to say I am in for a 1pm call (which is actually fine) but she has put a note for preferably morning, so I'm happy with that.

@Fantasea I am very pleased with the team accommodating you. In the worst case scenario they will ring you at 1 pm. And they have your note about the preference of you wanting to receive phone call in the morning. Fingers crossed!

Snack/sandwich trolley comes around pretty regularly, no immediate cut back to that yet, thank goodness. It is well stocked and I asked for apple juice when the lady came to pick up empty cups (I felt very guilty for her having to throw my coffee away. 😳 I also chose shortbread to go with it, bit into one of the two shortbread fingers, only to have bitten my tongue (left side of it) so hard I managed to get a blood blister! 🤬 That’s all need! 😡 It is pretty sore, so I am in the full Diffllam/Bethamethasone mode.

My bloods were fine, just scraped through the minimum neutrophils level (they were 0.54 and the minimum limit is 0.5. Go, neutrophils! 😂 I am also going to taper steroids over a week rather than stop them dead after 3 days.Can’t say I am enamoured with the idea but I did tell the team I crash abruptly after I stop taking steroids for 3 days, so they want to try dose tapering to see if this makes me crash less.

As you can see from the time I have posted, I am in a proper steroid-induced insomnia at the moment. 😏 I almost reported my own post trying to hit the “edit” button. 😂

@balkanscot So good to hear your labs were good. Mine were not (platelets too low) so my every other Wednesday chemo was canceled. I’m thinking the bone marrow suppression is looking worse. A bloody nose woke me up in the morning. I hadn’t had one in a week and thought they would be done for a bit. I tried explaining to family why chemo is so important but I don’t think they understand. Hang tough everyone. I had an appt with my palliative care doc and she seemed to think I spoke with oncologist about moving to hospice care. I was surprised. It was my impression the tumor was still the same size, and no mets or growth for the last year. I hate cancer.

@Sbmpp Was this a miscommunication between your palliative care team & your oncologist? It’s the last thing you need at the moment, one team thinking one thing, and the other thinking the opposite. And it is exhausting keeping on top of that. Would your medical team consider giving you Filgrastim injections to take at home? I had them 6 years ago to stimulate my bone marrow to produce more neutrophils when I was on EC (Epirubicin Cyclophosphamide). Apologies if you already tried them. I do worry about mine dipping below the 0.5 line next time as I am getting whacked again this week and the next.
A bloody nose is no fun, I had a few nosebleeds while I was an inpatient for 5 weeks at the start of the year, but I think they happened because the environment was so incredibly dry and I had lost all my nose hair. Hang on in there, I am thinking of you. Cancer is an absolute pile of stinking 💩💩💩💩.

I had to wrangle with my local pharmacy today, I had put in an order for a repeat prescription (two orders, one two weeks ago, one 11 days ago). I only got my 11days ago order today, despite the turnaround of 72 hours. And the two weeks ago one wasn’t fulfilled as it is not apparently on my repeat prescription. Why didn’t they phone me to tell me that???? Despite my discharge letter from the hospital stating it is. So I had to phone my local cancer centre. They changed their system, so you can’t speak to anyone unless you press the right button. They give you options for breast cancer team and any other cancer. So I pressed the breast cancer team button only to be asked why I pressed that, despite me telling them my date of birth and name, so they can bloody see my history. They don’t give you the option to press for the secondary breast team, so had to explain that as well, before I even got to explain why I was phoning. I just want a stinking Difflam oromucosal spray to numb my poor bitten tongue, before my actual mucositis from the treatment starts.

Why does everything seem to complicated??? I need a PA, stat! 😂

On top of feeling murderous due to the pharmacy cock up, I mistakenly pressed (on Instagram) on one of “cancer influencers” who puts self administered coffee enemas and thinks this enabled her to survive for 10 years with stage 4. I wanted to break my phone screen and strangle her there and then. 🤬

Internet is full of shite when it comes to cancer, I want to go and live in a cave with no contact from the outside world and people. Unless I have to go to my hospital appointments.

Here it is. Please feel free to ignore it. I just hate these myths. Your immune system and liver (as fucked as mine is) are the boss. Anything else is pure dross and misinformation. And interests is full of these when it comes to cancer.

She then lists a whole load of supplements that she “takes” and I googled them all - all of them interfere with chemo and other stuff, some may even lower neutrophil levels.

Sorry, I am all fired up now and need to stop looking at this person’s posts as they just rile me up further and further.

Love to you all. 💐

@balkanscot oh yes, I was very pleased with the service from the chemo unit yesterday. I've made my list of questions so am ready for tomorrow now.

Your tea trolley sounds like I hope mine will be like on Monday. I've pleased your neutrophils scraped over the line and your chemo could go ahead. I am dreading the chemo crash next week too, it was awful last time. Did you meet any resistance in asking to taper the steroids?

I'm so sorry to hear about your tongue and also the enormous hassle with the pharmacy, they sound as inefficient as the one I go to. What a hassle just to get some Difflam though and then to encounter a jobsworth on top of it all. I think this is the part of cancer anyone who hasn't lived the horrors can begin to understand even exists. To have to fight for every little thing with people who just really don't care when we are at our weakest and most vulnerable, it's just not fair.

I don't know what to say about the coffee enemas, and self-administered too, well of course they are, stupid woman. It's so offensive and trivialises everything about cancer, oh and of course, it's completely wrong. I've seen plenty of FB posts about various 'supplements' too but nothing as extreme as this. I'm raging for you too.

@Sbmpp I'm really sorry to hear about your palliative care dr thinking you spoke to your oncologist about moving to hospice care. That must have been a shock and really unsettling to hear. I'm sorry about your bloods and hope they can suggest something to improve your platelets, seeing blood from anywhere is really frightening, something I do understand.

@balkanscot I hate cancer scammers. So dangerous. And why do they always want to shove something up their rear end? Or stuff their faces full of horse dewormer; or aged urine therapy? And sod the whole sugar feeds cancer crap, that's simplifying basic biology way too far. If the only thing I can stomach whilst on chemo is a doughnut then I'm having it.

Hugs to you @Sbmpp , that must have been deeply upsetting to hear when you've been told that you are stable. I'm hoping they get back to you quickly with clarification.

Met with my new Southampton team today. Terrible parking then an hour and a half wait to be seen. Consultant seems nice and thinks 6-12 months if chemo doesn't work and obviously more if it does. They no longer allow Trabectedin to be done via a port so I need a Picc line putting in. Not delighted by that to be honest. Hopefully I'll hear tomorrow when the Picc will be done and chemo starts. Agreed to wait on the radiation to relieve pain in my liver and spine as I am managing well on paracetamol.

@Earlandmrsgrey Is the not allowing Trabectedin to be administered through a port, standard across the country, or just at Southampton I wonder? I have a port and don’t really want a picc ( if I can avoid it ) Seems rubbish parking and waiting an age and a day, is now normal, whatever hospital you attend. I thought Christie Hospital was just bad, especially as when I went to Oxford for a second opinion, I was in bang on my appointment time. Maybe that was a one off.

Such bloody pain today and so much I need to do in life. It feels like I
wont make it. Damm cancer and all it brings! 😡😡😡😡

@balkanscot Thanks for the filgrastim suggestion. Yes I do take them for five days after each chemo dose. They’re great for stimulating my wbcs but not so much for the platelets. I’ll be seeing my oncologist on Nov 10, will have the Petscan on Nov. 9. I’m not sure the results will be back but my dh (who worked there) said oncologist will be able to. The Petscan’s always scare me. I’m waiting for the time it’s going to be bad news. It is what it is. I hope you get your meds sorted . They’re good with mine so far. Also, as far as the cancer scammers go I’ve read about some of the celebrities here in the US trying coffee enemas etc. They don’t seem to work. Thanks to everyone who responded to my post.

@Sbmpp Apologies, I misread you post, and that platelets are the issue. Is the platelets issue one of those “you just need to wait and see” rather than there is something oncologists can use to boost ti up like they do with neutrophils? I don’t think I have ever had a PET (or an MRI for that matter) scan. I have only had the usual CT and bone scan. In any case I will be keeping you in my thoughts hoping the results will be positive. At least you will find out very soon after the scan, small mercies and all that.

Coffee enemas are extremely dangerous, especially self-administered ones. You can easily do lots of damage to your colon and lower intestines, even perforation. Not to mention introducing unnecessary infection into your digestive system.

@Enigma54 Poor you, it is horrific when pain is unmanageable and stops even that little bit of control and independence you have left. It is pure bloody unfair, being booby-trapped every step of the way. 🤬What other combination of pain relief can you be prescribed?

I now have self-inflicted sore tongue from biting into that shortbread on Wednesday. Plus it has now developed its usual oral thrush furry coating. Marvellous! Difflam oral spray saga continues. One of the secondary breast cancer nurses phoned me and told me the spray is definitely on the repeat prescription list and to check with the GP practice. I phoned the GP practice and they said the spray is not on the repeat prescription list, so they said they would investigate and give me a call back. Whenever that is going to be. OMG, such a palaver to get something so simple. I mean, I could buy it over the counter but I refuse on principle - I am prone to mucositis due to stage 4 continuous treatments and that’s enough of shit in my life, I didn’t ask for it, bloody well sort it out.

@Earlandmrsgrey I'm pleased you've met your new team and your new consultant is nice. The parking is terrible here too, no spaces and only one ticket machine for a massive multi-storey. I too am trying to avoid a picc line, not that anyone has offered me one. I'm hoping you can get started on your chemo soon, I know how hard the waiting is.

@Enigma54 I'm so sorry to hear about your pain, that is awful, it must be exhausting for you. Is there anything else they can give you? It's really not right to leave you to suffer like this.

@Sbmpp the PET scans scare me too. I had one in July and it wasn't as bad as I feared as the ceiling part of the tunnel was quite high and both ends were open so my eyes poked out when my body part was 'done'.

@balkanscot oh my word, the runaround you're having over your Difflam spray is ridiculous! I have a bottle still just in date from my maintenance chemo so I'm planning a GP appt next week to get some more. I too won't buy it over the counter, it's £11 a bottle and I can power through that in a few days.

I have just had my pre-assessment from the chemo unit so feeling very smug about not having to wait around all day. One worry I have got is that I have blood in my urine every day due to disease in my bladder, yet one thing to be aware of on chemo is blood in the urine. I asked the nurse how I distinguish between the two - she couldn't really answer so advised me to phone the helpline if I see frank blood, so that will be a call nearly every day. I'll see if I can catch a dr on Monday when I have my chemo and ask then.

Unfortunately there have been a few incidents of Trabectedin leaking due to the needle in the port becoming slightly dislodged whilst sleeping. It's a 24hr chemo infusion so a Picc line is the only way that most places will now do it. I keep having to tell myself that I wasn't going swimming anyway. But I am sad as it takes that option away from me and piccs are so annoying and grrrr.

Anyway, pre-assessment phone call will be Monday and pucc line insertion next Fri. With chemo on the 10th. District nurse will then visit on the 11th to remove the pump. Time scales are what I expected them to be despite the hospital move so happy with that. Unfortunately I don't think we're going to be able to get away unless my husband's work can do some shift juggling. I'm ok with that, his mother is also in the process of dying so it's kind of complicated anyway. Also I'm happily busy with lots of friends and family.

@Fantasea I hope you're able to enjoy your last chemo free weekend.

@Enigma54 I'm so sorry you are in pain and I hope you are given something soon that eases it. I hate cancer, I hate pain.

@balkanscot Does the difflam spray also gel with thrush? Or is it just for ulcers? I'm very worried about getting oral thrush again (although I have to keep telling myself that I didn't get it with my last regime).

@Sbmpp It's the liver MRIs that I hate the most. Trapped in a very noisy tunnel with some sort of cage contraption over me for 30+mins. At least the PET itself is quick, sometimes I even managed a little snooze during the rest period if they provide me with enough blankets.

It seems that I need an iron transfusion as well. Not at all surprised by that.

@Fantasea Tomorrow!!! 🤞Make sure you ask dr how blood in your is still making you uneasy and how to distinguish blood from the disease and blood caused by chemo. I hope they give you some reassurance. Also, chemo, finally, you have waited for so long. I hope it all goes without a glitch tomorrow. Still no news on Difflam spray! It was easier to get morphine than bloody Difflam!

@Earlandmrsgrey PICC lines seem to be faffy, not that I have ever had one (yet). They seem to be a pain to manage and keep dry & clean. If it helps with better Trabectoin administration that would be marvellous. I get you re: swimming. It is not so much about swimming, it is about that option being pulled out from under you. So sorry to hear about your DMiL, it must be such a stressful time for everyone. I do hope you and DH manage to go away. I know you said you would be OK if your DH couldn’t rejig his work but every little time away from the 💩 routine and reality, even teensy bit, may help mentally.
When is your iron transfusion due? I have only had magnesium and potassium transfusions, they took forever!

Yesterday I realised I have been taking my cyclophosphamide tablets wrongly for the whole first cycle!! I have been taking 1 tablet 3x a day. Instead I should have been taking 3 tablets all together 1x a day. I went all dizzy with worry and phoned the chemo helpline, eventually they said the efficacy shouldn’t have changed as I was neither overdosing or underdosing. I hate chemo brain!

@Enigma54 How is the pain level now?