I have just listened to another video by the same man at Sloan-kettering. This one is more recent and he talks about taking D3, again. I think he said 2000 IU a day or 10000 IU a week but I would have to listen to it again.
2 x AdCal D3 delivers only 800 IU a day. Your GP should be able to take a blood sample to determine your serum levels of D3. I wish I had taken the trouble to do that. You may need to be taking more.
Got to go shower and finishing packing.
Love, Cherry x
Just finished my last meal before op later. White coffee, toast and orange juice. Onto clear fluids only until 11am.
Jane, your comment on Vit D levels reminded me of this article.
I also saw a lecture by the deputy director for breast cancer at Sloan-Kettering, NY from a few years back in which he said he recommended 1000 IU of Vit D3 per day as a maintanence dose for people with low Vit D. I try to take extra Vit D3 but am very bad at remembering. I'm sure my own levels are low. Will start taking more again from now on. Interestingly, a few months before I got BC, I had some blood tests for an unrelated problem and the only thing abnormal was low Vit D. The GP recommended I take a multiVit supplement. It was only after I got breast cancer, I learned that this is all but useless way to supplement your Vit D. I wonder if the GP knew this?
Have a nice rest in Southwold. The weather is looking good.
A big hug for everyone. I will try and post here from my phone and let you know how I am getting on soon.
Cherry - holding hand tomorrow if you want it - I'll be in the pocket.... Mind you, if you're in a gown, that could be tricky! Seriously - you'll be in our thoughts muchly...
Wandy... horrid waiting... keep us posted = have a hand too...
Ninja - it all sounds just ghastly... I'm sure I've got a spare hand somewhere!
Jude - hoep things go OK for your mammo
Hi to Mandy & Rachel (hope I haven't forgotten anyone) and hope everyone has some sunshine, which is so GOOD for us... my GP said he's coming across a lof of people with Vit D defiiciency because of the weather!
Take care - going away Saturday for 6 days.... Southwold...
Oh Wandy, I so hope they find nothing on your MRI. I had my MRI on a friday and they faxed the results to my GP. He called me on the tuesday after. I missed out the UltraS but your journey sounds very similiar. Fingers crossed that you arrive at a different destination.
Ninja, I hope your wounds are getting better. It sounds as if the nurses are looking after you.
Wandy, Hope your MRI is NED. Do you know how soon after your appt on Sat you will get your results?
Jude, I really did imagine a big carpentry nail! Dr Google put me straight on that one. I spoke to the surgeon again and he said I should get some pain relief from just having the nail done. I am going to get my pain meds sorted out when I am in hosp. as what I am currently taking isn't enough. I can't sleep more than 5 hrs at night before the pain wakes me up and I am limping, as putting weight on my bad leg is painful despite the meds.
Good luck with your mammo and the results the week after.
Wandy - the nurses are being wonderful - they see me every 48 hours in plastics clinics and they tag me on to other surgeon's lists to get me in on the right day.
Getting the pack taken out and re-inserted is unpleasant but so far the cavity is getting smaller and they all say that it's very clean-looking.
The loss of skin on the expanded boob is unusual but it is a thing that they have seen before. I use iodine and re-dress it at home and they check it once a week.
They are monitoring the oozing scar and giving me gauze to wear to keep it clean and dry - it was fine but then the scabs got funny-looking and started oozing through my clothes.
I've told the nurses how frustrated I am, I just want to get fit again!
Lunch would be fab but I'm not up to travelling much and am still medically banned from driving due to the pack in my tummy.
Love to all xx
Great news Mandy...another one down! Cherry, lots of love and good vibes for Friday.
Ninja, your situation sounds awful.....is there nothing that can be done to help further with healing? Poor you, you must be struggling not to feel down. I know we are not too far from each other...if you want to have a lunch or something, do let me know.
Thanx for all good wishes.....Will keep you all posted.
Love and hugs to all my May chums.xxxx
Well done on your clear mammo, Mandy! I hope the niggle in your hip gets sorted with a bit of physio.
Ninja, I am sorry that you are having such a terrible time. Gentle Hugs. I can't comment on your seroma or boob wound but I had trouble getting my tummy scar to heal after my c-section years ago. It oozed pus and clear fluid for about two months but did eventually heal. I had cicatrin (antibiotic) powder to put on it but I think that has now been discontinued. It helped to keep it dry while it tried to heal.
Good luck for the surgery, Cherry. Good luck on Saturday with your MRI Wandy.
Nothing seems to be healing after my Tram. The big tummy scar is weeping. A seroma has broken through my stomach wall (not near the scar) and I have to have it packed and re-packed every other day. My boob still has an open sore on it that has been there for 2 months. I'm not moving forward at all 😞
Surgery Friday. Wish me luck. I will try and post from hospital to let you know how I am getting on.
Before I forget good luck on Saturday with your MRI Wandy.
Mandy, don't forget to let us know about your mammo results.
Love, Cherry xx
I am being seen at MV for most of my treatment but have had to go to a couple of other hospitals to squeeze into consultant's clinics. A case of where they had space and time.
I think all this double checking is because the radiologist who reviewed my MRI is according to the surgeon "world renowned" and the surgeon does not want to discount his recommendation without checking everything thoroughly.
It could be that the radiologist made the fracture risk comment to cover his arse and similarly the surgeon doesn't want to ignore the radiologist's findings for the same reason. At the moment the surgeon just can't see that I am anything but borderline. Hence the extra high resolution MRI that the surgeon can rotate so he can examine it from all angles.
If I have to have the operation it is not huge, even if the nail is not a nail but a rod that goes through the centre of the femur from the hip to the knee. (I somehow imagined something the size of a carpentry nail). It will mean a 3 or 4 day stay in hospital and a delay of about two weeks to start of chemo. If I don't have the op, I can see the onc in clinic on Thurs and get a start date for the chemo for the week after.
I don't know if I am exactly chilled or I have convinced myself that we can get the cancer into remission. My health is generally good. I have stopped going for my daily walk until I get the nod on the surgery. Recently, I upped my consumption of fruit and veg and only have organic chicken or lamb once a week. I have cut out dairy completely as that is where most of my fat intake was coming from - too much cheese and butter. I have lost 9 lbs since I made the changes. Keeping my diet changes allows me to feel as if I have some control over the disease process, especially as I haven't started chemo yet.
I do have a panic from time to time about not moving forward with any specific cancer treatment. When I do panic about not having treatment for the cancer, I visualise the little sh*t as a nasty black and red mishapen lump that is being attacked by pure white sparkling crystals. I know that it is not really doing anything but mentally it calms me. I suppose it is a bit like meditation that way.
My daughter and grandson are going home tomorrow and I will miss him but they will be back again soon. I won't however miss being woken up at 6am most mornings!
Morning ladies - hope a weekend with a bright round thing in the sky is coming our way!
The date was a first stab, and clearly not going to work, but the offer is still open....
Cherry, your pragmatism is awesome.... best not to operate unless absolutely necessary, as you say. Are you being seen at MV?
speak to you all later...
I really hope we can all get together.
Jane, Thank you for your generous offer. Easter Monday - my daughter and family are here but maybe we can get together for lunch soon depending on surgery ............
....... still not decided. The surgeon has looked at the MRI but is not convinced, as he can only see the lesion in one plane on the MRI. I am having another MRI on Monday. A high resolution one that the surgeon can explore from all angles. He doesn't want to operate unless it is really necessary. I'm happy with that!
I had copies of the invoices for my scans that were sent to my health insurer. Eye watering! CT with contrast was less than half the price of the MRI.
Have a good weekend everyone,
PS. Jude, I used to live near Newbury and seeing the race horses being taken to the gallops was a special sight, especially on a cold morning when their breath would hang in clouds before them.
Thanks Cherry - not sure whether that's good news or bad news, but the glass of wine sounds good news!
Regarding a meet up - I am near you, live next to a mainline railway station (Edinburgh- London) and 5 mins from A1M, if anyone fancies a pub lunch or lunch chez moi... not working Easter Monday..... accommodation available overnight for up to 4 - 2 singles, 2 sharing!!!
Just a quick update.
It's borderline whether or not I need the op. The surgeon didn't have my MRI results so did plain X-rays and these were inconclusive. He couldn't see the lytic lesion on my femur that the radiologist saw on the MRI. It is possibly in the bone marrow. He will review the MRI when he gets it and contact me at the end of the week. If I need surgery, I will have an intramedullary nail put in next week. As long as it heals OK I can start chemo about 2 weeks later.
If they don't do the op, they will still need to biopsy the mets. They may have to go for one in the lungs.
Sitting back and trying to relax a bit now. May even have a glass of wine.
Love to all,
Thank you all for reassuring me that I wasn't being too sensitive. The only excuse I can make for her is that she is fixated on disease and illness. It is her favourite topic of conversation. Many years ago we moved to a larger house in the same town and her very first response to the news was, "You'll be nearer the GP's surgery, now". If I recall correctly, everyone else commented on the fact that my daughters would finally have their own bedrooms.
Jane, if that woman knew you when you had hair loss from chemo than her remark was thoughtless. People just do not think before they open their mouth sometimes. I have been guilty of it on occasion and I could just kick myself afterwards.
Seeing the surgeon this afternoon. I will let you know how it goes.
Cherry - words fail me!
Nothing like as bad as your experience Cherry, but I was at a do last week where someone (who should know better) bounced over and said "I didn't recognise you! You've died your hair a lighter colour haven't you"? Which to me, means "you lost your hair, it hasn't come back looking like it did before" Thanks for pointing that out!
However.... your "friend" takes the biscuit!
Wandy - long time in "the waiting room", which is a hard place to be....
love and hugs
Wandy, It's a long time to wait when you want to know what is going on and be reassured that everything is OK. I hope that it goes well.
PS. The pain is much better than it was before the GP switched me to stronger pain killers. I do have some pain but it is only when the taglets are wearing off.
Aren't people extraordinary???! You have to marvel at what comes out of people's mouths!!
Thanx for asking Cherry. My MRI date came through today. It's in 2weeks.....Apparently there is a backlog and my appt is on a Saturday at 7.30pm!!...they are obviously working all hours... Will let you all know how it goes and what the results are.
I too am happy to travel and of course we must see how your treatment goes.....Hope your pain is under control.
I hope we can organise some sort of get together. I will be happy to travel once I know what is going to happen and how I tolerate the chemo when I start again.
Do you remember a thread from way back when which was about the things people say to us when we have been diagnosed? I had a friend call round today. She knew about my diagnosis and the reason I was initially referred for an MRI - back pain that was not getting better. She chose as her main topic of conversation her back pain and how she couldn't get a referral from her GP for physio. Although she may genuinely have back pain, it seemed an odd topic for discussion. When she had left, my daughter who was here with me said, "WTF!"
Also, the friend asked if I had cancer in my kidneys. I had already told her it was in my bones and lungs so asked while she was asking again. "Well my father-in-law had kidney cancer and I wondered if you had it, too."
Any news on the date of your MRI, Wandy?
Yes, Jane, I remember because we both has our rads at the same place but you just finished just as I was starting.
A meet-up sounds good.
Not sure where. Wandy is North West, I'm North East, Harp is Mid West. Waht about the rest of you?
This forum is readable by anyone on the web, so I'm being deliberately vague.
I would love to get together depending on how my treatment goes.
Just hoping that the surgeon can operate asap. I would be really happy if it happened before the end of the week. Fingers crossed!
Thanks for the hugs Ninja. It's great to know that all my May buddies are here for me.
Say hello to Angielav for me and tell her I hope she is doing well.
Cherry - BIG BIG BIG gentle hugs from me - bad news and good, in various measures.
I hope they can get your femur sorted asap so that the other treatment can start to shrink/contain/evict the other cr*p.
I'm still in your pocket xx
Wandy - sending wishes and hugs to you, too xx
Your story about having the metalwork in your leg was very reassuring. I had hip resurfacing (like hip replacement, but not so much metal) done about 6 years ago. The first couple of days were a b*tch but I was only in hospital 6 days and was walking around without sticks after 6 weeks. I am hoping this heals more quickly only because any problems will delay the start of chemo. It is awful sitting here knowing that they cannot begin to treat this until the surgery is over. In the meantime it is continuing to grow and spread. I also asked on the secondaries forum if anyone else had to have this done and two ladies came forward. One whose leg was at risk of fracture and another whose leg actually broke.
My onc was true to his word and the orthopedic surgeon's secretary has called with an appt. for Wed.
Love, Cherry x
PS. The other reason I am anxious to get this seen to is that my onc wants to rads blast my sacroiliac joint to give me some pain relief, which he will do after the surgeon is done with me.
It wasn't what I wanted to hear. None of it was. But the onc said he was really expecting it to be in the liver and lymph nodes too but they are clear, so that's positive. More worried now about tripping up and breaking my femur. My onc asked me to be extra careful until the surgeon has sorted it out. He said he was faxing a letter to the surgeon this afternoon and I should hopefully get an appt very soon. The onc cannot start chemo until I have healed enough from the surgery, about 3 weeks after. I hardly have any pain in this bone -very strange.
My eldest and my grandson are coming to spend next week to stay with me. She is taking it as holiday but she can get additional time off as unpaid leave if needed. She works for a large national firm and they are very good to their employees. They always figure in the list of Best companies to Work for. Unlike your OH dept Jane, that charges for treating staff.
Love to all, Cherry x
NOT what you wanted to hear, but maybe what you were half expecting (and fearing). I really hope the Onc is on the ball and something happens soon - it's never "soon enough" for our liking though. As Wandy has said, we are here for you... though none of us can know how you feel, we are still a safe place to scream, rant, cry... whatever you feel..... virtual hugs and wine are called for I think....
Mandy - hope the physio can do something. I've had wonderful treatment from them for a torn rotator cuff recently. Our OH dept charge our managers for physio!
keep us posted, both of you....
Fingers crossed for you for your results and your pain.
B****r, not the greatest news, but now you have the scale of it you can concentrate on your treatment. We are here with you all the way. Come on whenever you want, rant, or not...weep or not....share whatever you want or need to. We're all in your pocket!!
Love and hugs
Mandy, Fingers crossed that the your mammo comes back clear and that your physio can sort out your hip problems for you and it is nothing sinister.
My onc has just called with my results. Not much good news. There are mets in my lungs (two quite large ones) and various places in my spine too. There is disease in my left femur which means I am at risk of fracture. My results have to be reviewed by an orthopedic surgeon and I may have to have some metal work put in to protect it, before I can start chemo. The good news:- my liver is clear, nothing in my brain or skull and my lymph nodes are clear. I am really anxious to get some treatment started. Onc will probably try tax first. They are going to biopsy either the bone if they have to operate, or maybe the lung tumour. If it is now expressing HER2, I will start herceptin.
It is not going to be an easy journey but knowing you are all out there to hold my hand is a great comfort.