One thing I noticed was that the Oncy always feels around my neck and clavicle each time I go to see him. I since found out that there are also nodes that can be affected in those areas so I asked him last week if I had any enlarged nodes there and he said no.
That’s prolly the first positive thing I’ve heard. Everything else has been, “You could have xx and yes, you have”.
I’m due for a further MRI in the third week of August so I guess I’ll the surgeon again after that. I wonder if he knows yet if he is considering WLE or Mx…maybe I should ask but I’m a bit scared about the answer.
Well Ninja it’s good for you to have some good news for a change. I’ve never had my clavicle fondled. So glad there’s nothing there. Pluck up your courage to ask the big question. You may be worrying unnecesarily and if the news is mx then you will know what you’re dealing with. It’s a lot to face after everything else that’s happened.
Looks like I’ll be moving house very soon, end of August as we’ve managed to let ours out in prep for our hopefully not to distant saling plans. We’ll be moving from a rambling old 5 bedder into a 2 bed dolls house, 2 doors up the road that used to be the Dower house for our house which was a whopping house 50 years ago, now split into 3, plus Dower house. Wish i had a TARDIS house.
I had my second ever appt. with onc yesterday. He checked both breasts, both armpits, along my clavicle and also my liver (looking for any enlargement, I assumed). They are definitely looking for lumps and nodes. Its good to be told that it all seemed normal.
Ninja, forgive my ignorance but what is an N3? You might want to ask what kind of full node clearance you are having. Before I went in for my WLE my surgeon said that he would do a level 2 clearance if any of the nodes were positive from the SNB. There is such a thing as a level 3 node clearance, too, where they take out even more nodes. It might be worth asking what the pros and cons of a level 2 v. level 3 are. I never did but I was still walking around in a fog at that time. Sandytoes, the level 2 v. level 3 thing applies to you too, if they are saying a full node clearance.
I was told I would not need rads under my arm if I had a full clearance, only the breast.
Rachel,I have TAX 2 on Monday (I hope it is easier than the last) and TAX 3 August 30th. Sometime this month I see Dr. A for rads planning if I decide not to go thru with the auxillary clearance. I’m usually at the hospital on Mondays for blood tests, let me know when you are there, maybe we can meet up for coffee.
How come you see see a different onc each time? I always see the same one. Can you ask to see the onc and the surgeon together? they should be discussing your case in the MDT and giving you feedback.
Make sure you have your list of questions for them and tick them off as you go, I found this to be very helpful.
Hope everyone is doing well today.
Noanie
Hips - GL with the house move; I’ve survived (very knackered, but survived) and you will, too.
Cherry - it’s the classification that my Oncy uses. Instead of Stage/Grade, he uses the TNM system. It stands for Tumour, Nodes, Metastases.
I’m T2-3, N3, M0. I was told from the off that all nodes would be cleared as I have always had “extensive” tumours in my nodes - I’ve not had, and am not having, an SNB.
You do have to keep your wits about you don’t you? The practice nurse kindly sorted me out a different drug to combat the wretched thrush (I’ve become immune to the first two)… so I cheerfully thank her, take it, then before bed, read the leaflet… it’s contraindicated with the statin I take as well! Saturday morning by this time… no GP… ah well. Mount Vernon helpline… presumabaly if I stop taking the statin for a week and take the course of (what sounds like a drug that will FRIGHTEN the thrush away with bagpipes - Sporanox!!!)… will that be ok? Have to ask pharmacy, but yes. that will be fine… I don’t often read the leaflets (possible side effects too depressing - and I find what I don’t know about I usually don’t suffer from !) -thank God I did this time! Jane
Some of the possible side-effects are laughable if they weren’t so worrying. For example, one anti-depressant states, “may cause depression”!
Other drugs can cause “suicidal thoughts. Please let your doctor know if you want to commit suicide”.
Blimey.
Jane-I love sporanox-do you put it under your kilt???
Side effects of drugs are mad aren’t they. One of my painkillers said “May cause confusion.” Nobody would notice with me if it did!!
The funniest thing happenend today-I went riding with my girls and actually wore my wig for the first time because I thought riding hat might look less scary with hair under it. It did until I took it off at the end—and the wig came off with it and fell on the floor!!! My girls were in stitches, and the riding instructor just said “keep your hair on” It was very funny and actually I wasn’t embarassed at all.
Noanie-My chemo is on Thursdays so I doubt our paths won’t cross, but thanks for the info re node clearance, and maybe you can make the next meet up which is on 19th August I think (see Shropshire thread). I’m seeing Dr A on Monday but at Telford not Shrewsbury. Hope I can finally get some straightforward answers. The first onc I saw was a locum and I didn’t understand him at all-had to get BC nurse to translate afterwards, the next one was great but was leaving the following week and said he couldn’t sort it out! Am armed with questions this time and won’t leave til I get answers!
my latest anti emetic has ‘may cause nausea’ as side effect. How the hell do they know that? They were right about the burping though. wish the sleeping pills would kick in.zzzzzzz
Hips, if you’re getting digestive probs with it, next time ask for something like omeprazole or lansoprazole, which are both gastric protectors. They will really help with burping and heartburn if you’re on ondandestron.
Good morrow. The bloody Tax is doing me 'ead in just lately with the neuropathy. It started on Friday and my feet and parts of lower leg are numb and it’s not pleasant. Yesterday it was like walking on a slab of stewing steak. I’ve slowed down to the speed of a woodlouse - with a gait just as attractive.
Ninja, you have such a way with words! Wish I could offer something useful re the neuropathy, you’ll have to just put up with a virtual hug in the meantime.
Thanks. The Oncy did say that if I got PN, that I would have a dose reduction. Another one? He’s already knocked off 10% to stop the River Nile in Flood thing - which seems to have worked.
I’ll be on negative equity soon…
Ninja-I’ve got wooden legs and feet from tax and tingly fingers, but it does seem to get better just before the next dose. My daughter says I walk (and look like) Big Baby from Toy Story 3!
Been struggling a little this week after TAX2. Started off well as usual then BAM! I had the achey painful legs, tingly toes and fingers. Nothing compared your leg numbness Ninja!
I also woke up yesterday and my lady garden or lack of!! looks like i have had a massive bout of chicken pox!! Any one else had this area go spotty and sore they continue up to my belly button! Not very appealing in the bedroom!! Feeling bit under the weather but no temperature so all ok.
Sandytoes, i have the numb balls of feet, and my toes go really cold, glad your Se’s are small.
I like many of you have 1 more TAX then 20 days of Radiology, have appointment on the 28th to discuss. I have asked not to have Rads on my armpit, and because i had 1 /19 Onc think i will be able to avoid this area.
Is Rads a bit like drive through at McDonalds, Onc said takes about 1.5 minutes for Rads, longer to line machine up than have Rads. So i am thinking 30 minutes drive, 30minutes trying to find a space and treatment 1.5 mins!! Can’t wait!
I really enjoyed reading the posts on side effects from medication! Brilliant! I always read them and think what the hell am i taking!
I was hoping that having 1 more treatment left,would make me feel on top of the world and looking forward to this all ending. Why is it i feel quite low and Pi**ed of that i still have this ONE last poison to go. Been close to tears several times over the last couple of days, then have to pull myself together and say the end is just around the corner.
Hope you are all feeling well and SE’s not too bad. I am still feeling bit delicate so apologies for spelling and grammer, not that i was any good before poisons.
Trish, that’s because you’ve been through all you’ve been through, and you STILL have one more to go. It feels like an uphill struggle, but once you’ve climbed that last hill you’ll know you won’t have to do it again.
As for the spots, could it possibly be that the hair follicles are trying to wake up again? You might have blocked follicles. If it carries on though, go and have a chat with your GP. It’s possible you’ve managed to get an inflammation of the hair follicles and that can be a bit uncomfortable, but can be sorted. And if you’re feeling a bit under the weather (more than usual with Tax) then give the chemo unit a ring anyhow. Actually, scratch most of this last paragraph and give the chemo unit a ring in any case, as they may want to take a look at your spotty bits in case you need anti-bs they will be able to sort out for you.
And as your mother will surely have told you, DON’T SCRATCH!