Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

"HauntedDishcloth"The bloods were at the Oncology centre. There only appears to be one phlebotomist. I used to nip down to the general blood room, but they stopped allowing oncology patients to go there !
"Topofthe Cliff" I did buy a car ! Not a sports job though

Sorry bold fail, used wrong characters!

@AlbertCampion I have my CT booked for tomorrow which I'm pleased about as the results should 'catch' the MDT on Wednesday. Sadly, I have learned from bitter experience that unless I make a complete nuisance of myself, nothing will get done and I will be perpetually waiting for someone to 'call me back'. I rang yesterday to check I was on the referral list and was told it had to be 'protocolled' by a radiologist (whatever that means). I rang this morning and the girl booked me in for today - had I not rung I would just be on their list of calls for next week, or maybe the week after . I am back to chasing everything and feeling quite down about it all.

@SewingBees do you have the mouthwash with some anaesthetic in it - Diflam? You can get it on prescription.

Just home from hospital. Yesterday morning poor dd pointed out I had bloody jelly over my teeth and across my face. It got worse through the day and they said go to a & e to assess. Then admitted to oncology for a platelet transfusion 4 am . Levels are now borderline. They'll have to recover an awful to be able to continue Kadcyla. Liver enzymes and other stuff also off. I'm only 3 cycles into 14. Echo and bloods Monday, brain CT wed. Seem to be spending more time in hospital than on 'full' chemo.

Oncology nurses very angelic though

Serious test of my new zen attitude. Not to shabby but a bit fed up. I had a work deadline Friday and a meeting this morning missed.

I think I should probably point out that I seem to be very drug sensitive before others on Kadcyla freak out.

@SewingBees Use difflam and corsodyl regularly to keep your mouth intact.

@Acinonyx2 You and I should never be the poster women for chemo and surgery. If it could go wrong then it would. It’s partly why my menopause specialist gynae has said she wants to wait before prescribing me anything because if it can go wrong it’s likely that it will for me.

2nd Docetaxol on Tuesday, not looking forward to it but it’s nearer the end.

Big hugs to you @Acinonyx2, that sounds rough, not surprised you are fed up. So horrible dealing with body malfunctions. Glad you are back home & hope you have a good rest. I'll be keeping everything crossed for next week.

@Acinonyx2 How awful for you to go through all this, especially after the glue ordeal. Do they really think you can carry on with the Kadcyla? Sending all the vibes for getting your levels back on track. Take care

@quinin thanks. No rest for the wicked though - need to get work caught up (I work contracts - important not to appear 'sick') and clean house for guests tomorrow.

@HauntedDishcloth I expect I will either try a reduced dose or ditch it and just have herceptin depending on next blood tests.

@MrsPnut No kidding! Between us we have done it all!

@Acinonyx2 I’m willing your platelets up again. Surely your luck will turn soon? Someone else has to take on the mantle of Most Unlucky Patient.

I went in for Herceptin 17 and Zolendronic acid 2 but the nurse and I had forgotten about the blood tests so we had to postpone the ZA till tomorrow. I wasn’t too upset as we had a BBQ last night and I was able to enjoy it without the side effects.
I’m still staying outside and avoiding close contacts but we had a dozen guests who helped me lots as DH hadn’t really factored in my treatment when he chose the date
Nothing planned now for a few days in case the ZA is as gruesome as last time.

I can see the end of active treatment coming up soon. Wahoo! Despite all the nurses foreboding I am going to be so happy.

Regards to all
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Afternoon all. @NewlyDiagnosed welcome to the thread no one wants to join.
I had my PET Scan booked for earlier this week, was en route and they called me to cancel it, dye hadn't arrived that morning - fabulous.
Booked me in for Friday instead and I should be part of the MDT meeting on Thursday where I find out what treatment I shall be getting.
I've got Folliclular Lymphoma, it's low grade currently but one tumour is being a pest and quite large, Haematologist thought suitable treatment would be a bit of targeted zappage but this would be decided by the MDT.
Hopefully I have a treatment plan of some sorts by this week. 🤞

@TopOfTheCliff hope the ZA is better this time. Mine is due this month and I'm not sure I want to remind them as it was ghastly.

@PaddingtonStareBare hope you get a solid plan asap.

Hi all. I’m feeling very anxious and wonder whether you have any advice or reassurance.
My breast reconstruction was cancelled this morning while I was sitting in my gown waiting to go to theatre. The surgeon is ill with a fever. Surgery has been moved to the 20th-a week’s time.
I have had chemo first as I’m her2 positive and it’s been over 5 weeks since my final chemo. The register who saw me implied that the gap between chemo and surgery is too long ‘by what can you do?’ It’s made me very frightened.
I do have some more Phesgo (Pertuzamab and Trastuzamab) on Wednesday.
Any thoughts on how worried I should be by the delay? Thanks for reading.

A week won't make any difference, I had to wait 5 months for my surgery with some anastrozole for hormone reduction because I was having treatment for my vaginal cancer.
In fact it would have been 9 months wait but I changed surgeons and hospitals to speed it up.

Thanks @MrsPnut. The registrar got me worried as she was making a big thing of the wait between my last chemo and surgery being well outside the guidelines.

@lunificent I'm sorry I don't have any info or wisdom to share, I just wanted to sympathise with your horrible situation. To have your surgery cancelled at such short notice is very cruel (though of course not the surgeon's fault). You will no doubt have built yourself up to face it, and now you'll have to do that all over again in a week. I'm really sorry this has happened to you at such a difficult time.

@Lunificent I was in the same position also Her2 and looked into it. The threshold for getting antsy is about 8 weeks and more antsy at about 12. I wouldn't worry about waiting 6. Even the longer waits - it's a just a slide in the stats not a cliff.

I was so anxious about surgery though and I know how distressing the cancellation must be after gearing up for it.

Thank you for your kind comment @SewingBees.
@Acinonyx2 that’s very reassuring. I was starting to try to google relevant studies and stressing myself.

@FizzyOrange I'm so sorry to hear you're still having to push to get anywhere. What a bloody nightmare. It really is outrageous that you have to constantly fight to get care of a decent standard.

@Acinonyx2 that sounds horrific and really quite scary. Hope you are starting to feel a bit better after the transfusion. How are your energy levels? You must be exhausted by it all.

DS has just tested positive on a lateral flow test 😭 He had a temp & headache so I tested.

I still feel like crap from the chemo but I'm thinking of staying elsewhere as they will prob all come down with it and I'm hoping to swerve it.

Anyone got any wise words or experience of this situ?

@quinin My double jabbed friend came down with it three weeks ago and neither her husband or daughter caught it so you may be lucky. On the other hand if you can book yourself into a hotel and have room service and a bed all to yourself then that sounds pretty good too!

@quinin I had the vaccine while on chemo, which I suppose is the equivalent of a mild dose of Covid, and it knocked me for six a bit. I ended up having to go in, and it delayed my cycle. I would be tempted to swerve it if you can. Have you asked your nurses what they think?

Thanks both. I'm going to stay with a relative in the hope I swerve it. DS is sneezing away upstairs but doesn't feel too bad in himself. DS and DD share a room so would be amazed if she didn't get it, although when I had covid last year nobody else at home got it but our whole team at work went down with it in two weeks 🤷‍♀️

I changed oncologist and hospitals last week as I had lost faith in mine, so im currently CNS-less but it's a good idea & I'll contact someone today to ask advice. If I get a temp I guess I'll have to go in but really hoping not too.

Oncologist has asked me to get a urine test to check for infection, at my GPs. Rang them, they send the samples away to be tested now ! Its just a dip a bit of paper in the pee test, why on earth cant that be done at the surgery? My vets do it for the animals at the surgery , I think I'll go there instead !

@thereisonlyoneofme the oncologist may have asked for a urine culture which has to be done in the lab. The surgery can only do a dip urinalysis which is useful but not the same.

@quinin hopefully your previous infection will protect you against being poorly this time. Fingers crossed.

@Acinonyx2 I had the ZA infused quite slowly and enjoyed a chat to a lovely old man having his second chemo dose. Today I am having a duvet day just in case but so far I am feeling fine. DH is upset because he hates seeing me unwell or in pain. I think I may need to start hiding how I feel from him which doesn’t feel right but he is a real softy and gets my symptoms by transference.

I am enjoying planning a birthday treat for him, involving a high tech present and a trip to a secret location in the dark. It will be fun!

Best wishes to all. Hope the newbies are settling in and the waiting is not too unbearable.
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@quinin so sorry to learn that you have the additional worry of getting covid .

Also very sorry that you have lost faith in the team that were responsible for your care .That really is the last thing you need . Have you selected a different hospital ?