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 how did the operation go - were you in for long? And have you gone for reconstruction? (Immediate or later?) If you don't mind me asking?

I was only in one night for the mastectomy & it was very straightforward, but I didn't have reconstruction at the same time as I needed radiotherapy, which I've just had. But I'm likely to have it in about a year's time once, possibly DIEP. I had wanted immediate reconstruction - I think that would be easier to deal with emotionally/mentally but more involved physiologically.

@haunteddishcloth I'm looking on the bright side of not being able to have radiotherapy that I can get it over and done with (last time with the chemo surgery and radiotherapy it took 10months)

@FizzyOrange I am going on Niraparib too. with trepidation, as I have a heart problem and also high BP, which this PARP can affect. Supposed to be starting tomorrow, having ECG and BP check first then collect pills.
I may stretch to not taking it till Friday ! Why are you having AVastin too?

I have been feeling physically fit lately not on any drugs, its been lovely, even though the mental strain is dreadful.

Someone said to me "Its only four months to Christmas" this morning, thats enough to depress me straight off !

@thereisonlyoneofme they are having to retest my ovary for HRD as the original test came back inconclusive. If it tests positive then I'll have the Avastin as well as the PARP, if negative then I'll just have the PARP. Physically I am also feeling the best I have felt for about a year but the mental side has taken a real hammering. Much as I want to restart on treatment as I really don't want to be 'set free', I am dreading the side effects. I really am never happy and settled with any of this and often feel I am wasting the life I have left by fretting and worrying.

@FizzyOrange My thoughts exactly. Ive not been tested for HRD as far as I know, its never been mentioned.
I think if you we are lucky enough to feel well it seems so unfair that we know we are not. Everyone tells me Im looking well, well they want to see me in the evenings when Im at my very lowest. I keep telling myself not to imagine what is going to happen, as when it does happen I will have already tortured myself over and over again about it but its easier said than done isnt it. Trouble is I spend most of my time alone and it does make you dwell rather.
Lets hope the PARPs do their job

Hi
I had breast cancer 6 years ago-had lumpectomy and full axillary clearance plus rads and FEC-T.
And now just recovering from toe amputation and sentinel lymph node biopsy due to malignant melanoma.Felt really unwell last night and turns out I have cellulitis in the biopsy area so feeling a bit dejected-I’m four weeks post op and have to wait another two weeks before I get my results.

Thought I'd mark the moment with a new user name.
In Scotland, where waits for cancer test are horrific, but FINALLY had a vaginal scan today due to post menopausal bleeding. I was expecting it to be ovarian cancer, but they think it may be endometrial cancer. The nurse did a biopsy. Now I have to wait up to 2 weeks for the result. The nurse has advised me not to Google. Do people think it's better to know nothing at this stage? It's not a cancer I'm familiar with. I've already had 6 weeks of worrying about ovarian cancer, and am having lots of stomach problems for whatever reason.

Saw my lesser-spotted rarely sighted oncologist today gearing up to restart kadcyla on Monday. @TopOfTheCliff she did decide to have a reduced dose next time just to check the response. I said I felt abandoned by oncology when things went literally 'tits up' and she apologised so I guess we are friends again now. I think she was also relieved that unlike surgery and radiotherapy, I thought giving me that first dose was a perfectly reasonable decision and I am more informed than most to say so. I just didn't like being abandoned when it went badly.

I really feel this drug is make or break for me though having a number of metastatic nodes after surgery. But I feel rather like you @FizzyOrange - I want the treatment but dread the side effects.

@Oncewassmith hope your surgery goes smoothly.

@Mollymalone123 that sounds rather miserable all round - being unwell and waiting for results. Is the cellulitis being treated now?

I expect quite a few of us got A level and GCSE results this week too - latter for us. All fine but I do hope I can be a bit more aware of what's going on at 6th form than I was during last year 11. Part of me also hoping I stay well through it - get her through that at least.

Well I can confirm the contrast CT scans make me feel like I'm pissing myself! Just as well they warned me beforehand. Took several attempts to get the canular in though, I have a few bruises tonight 😔.

Got home, burst into tears from it all. But then my phone rang and its the oncology ward confirming my appointment for next week.

Not long til I find out what this all is and start the fight. 💪

Trying to decide what and when to mention this all to my daughter - 12. As I know whatever I say she'll Google 🙄.
Silence might be the best method currently.

Wishing everyone the best in here x

Welcome to the thread @Mollymalone123 - sorry you're having a rough time at the moment

@Nothapppy Have you been on this thread with a different name or changed name to join the thread? If you do google, try to stick to the official main cancer charity sites. There's so much information out there, the treatment landscape changes all the time and it can really depend on exactly what you've got.

@PaddingtonStareBare I didn't tell my DC until I had a treatment plan in place as I thought that would lessen the element of uncertainty.

@Acinonyx2 Are you having any additional meds with the Kadcyla? Steroids, anti-sickness, etc? I forgot to ask my oncologist. Also did she say anything about scans? I don't think they tend to do any but I'd like one before to check there aren't any mets anywhere that would need different treatment.

@HauntedDishcloth Kadcyla is the first-line treatment for mets in my situation anyway (that's why it's prescribed if you don't get the all clear after surgery) but I didn't ask about that specifically - I had meant to but got distracted. I will next time. My gut feeling is though that if I have mets - they are probably really teeny and you probably couldn't see them yet. how to monitor the situation going forward is a worry though.

She's added in Aprepitant for nausea next time.

@PaddingtonStareBare after some terrible scan-cannula experiences I now get booked into vascular access and have an expert put in the cannula (so easy!) then go off for my scan. Perhaps you could ask about that in future? It is miserable.

dd was 15 so older and I told her from the biopsy onward. She never mentions it at all though - it's impossible to know what she's thinking.

@Acinonyx2
On antibiotics and feeling a bit tired - got my appointment through for my results and it’s not until 6/9! Apparently the surgeon is on holiday for two weeks. I’ll just try and put it out of my mind.I knew with melanoma the results take ages but was hoping I’d hear sooner.

My next chemo has been pushed back for another week because my oncologist wants to see me before I start docetaxol. My chest has improved ever so slightly and I can only tell from the photos we have been taking each week. I'm not sure how they are going to manage to access a vein though, I'm still bruised from my day trip to acute oncology when I had three veins blow.

@Mollymalone123 Welcome, I hope the antibiotics kick in quickly.

@MrsPnut
Thank you
Have they not put in a port for u or is that not possible-at start of chemo I had one one and it made everything so much easier -sorry if it’s been mentioned before

@PaddingtonStareBare
I held up everyone’s appointments having the same problem-they used a child’s cannula in the end and it went in ok-but only because a rep had dropped off some samples to the dept.Next time I had it done there was no issue so hopefully that’ll be the case for u xx

Thank you for the welcome- I was sent an invite to join melanoma group who have been fantastic but honestly it’s too much for me to read at the moment as I lost my sister to melanoma years ago and everyone thinks you’ll be ok because it’s ‘just’ skin cancer

@Mollymalone123 I have a port but had an extravasation of epirubicin and fluorouracil into my chest at my last chemo 4.5 weeks ago. The damage isn't as bad as it could have been but they can't access my port at all for the swelling and tissue damage.

Peridito thanks so much for posting. I felt quite emotional reading your message. 8 years is amazing and gives me hope.

One thing I'm worried about is regaining the weight I've lost. Have you returned to a 'normal' weight? Its early days for me as I'm only six weeks post oesophagectomy and it's been fine so far. I restart chemo next week & have already warned me it will be brutal and I'm worried I'll lose more weight. I find eating 4-6 meals a day almost impossible, although my portion sizes are reasonable. I've lost 7kgs so far and wasn't overweight to begin with 😑

Big wave to everyone, I'll read through properly later. I'm exhausted today, I've just come back from a solo week away with the DC's. Was nice to have a change of scenery.

@quinin ,everyone is different ( at one stage I thought I'd slap the next health professional who told me that ) but yes I regained weight .I don't think I was eating anything like 4 to 6 meals a day so soon after the op .

I really hope no one has used the word "brutal" to describe your next round of chemo .I found I had slightly greater side effects but it was manageable .And they are very quick to reduce the dose if you are struggling .

You must be so tired if you've been away and you're only 6 weeks after the op . That's an ambitious act you've done there . Rest now ,you've come a long way and the major bit is behind you !

Hi Ladies,

I know this is for cancer suffers but I have a question that I can't find the answer for.

Dh (40) has terminal stage 4 bowel cancer as you already know. He's started a new chemo a couple of weeks ago and his hair has pretty much gone, however, his scalp is painful and wearing a hat doesn't help as it rubs.

Do you ladies know of any magic potion that will help?

This chemo is really kicking his ass this time and if I can help a little bit I will.

@loubieloo4 have you tried the usual recommended stuff, like Aveena? Hopefully you might find it's less painful when the hair is all properly gone - it's the shedding stage that's painful. Also, I had a fleece-lined beanie that was extremely soft and very comfortable.

@Acinonyx2

We have loads of aveeno in! I might try it tonight before he goes to bed!

Thanks

@loubieloo4 if aveeno doesn’t work I suggest Udder cream.it helped when u had plantar/palmar from taxotere infusion

@MrsPnut
How horrendous -I’m so sorry!

@Mollymalone123 hello, sorry you find yourself here. That’s a long wait for results. I had malignant melanoma a couple of years ago (as have both my siblings) so it’s not “just” skin cancer, as we both know. Please bear in mind that treatment for melanoma has come a long way in the last few years, so your treatment options may be very different to your sister’s