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SCANXIETY!!

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Re: SCANXIETY!!

Fingers and toes crossed for you, Mollymop! Waiting is so hard....you've been on Taxol for a long time! I never thought you could stay on it for long because of the side-effects? I haven't yet tried Taxol but have done pretty much everything else so that is encouraging! Xxx

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I have an appointment for scan results in the morning. Have been on weekly Taxol since March 2015 so very conscious that my luck will run out at some point. I will have been stage iv for 4 years in February. Am thinking of everyone walking this path xx
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Bumping up for Marie14, and her Mum

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Dear stresshead

I am so pleased to hear your scan was clear from what you thought it was. I know how you feel although you have been given a logical answer to your lumps in the neck but as we all feel there is always that doubt. I get it when I know my spine is covered with mets from top to bottom also I think I have a skin met on my head So it is a good idea to request the neck is included with the CT scan.

Sending you ((((hugs))))

 

Dear Waffles

Lovely to hear from you I am sorry cape stopped working for you after you were coping so well. My first scan on cape showed a reduction in the tumour so it was such a surprise when it increased to lungs and liver in such a short time. My feet were pretty good on cape but since I finished my feet are always peeling. I do hope your new tablet is working for you I was offered it but chose Paclitaxel instead which now has stopped. This new drug is a hormone drug which is used for recepter ER+ yes this drug is a jab in both cheeks of the bum. That was bad enough but the pain I felt later was quite worring in the back and groin especially as I now have mets in the liver. It lasted a few days but has now gone thank goodness I too thought could it be that the juice attacking it but I think it was wishful thinking but I have had that pain before which led me to having a MRI for the spine. It will be interesting to see how next week goes. I will get over it.

Sending you ((((hugs))))

 

Best wishes to everyone waiting for results love and (((hugs)))  xxx

 

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Hi Stresshead, glad to hear nothing sinister was found on your scan, I understand what you mean about "not being convinced though" think we always have that bit of doubt don't we! Like you say though take the results and sit back and enjoy Christmas!
Hugs Janette xxxx
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Hello stress head
See you have been busy today posting but just thought I would dip in to say that I have my fingers crossed that the scan was a panic and nothing too serious .
I think our lives would be so much better without them !!
Anyway ..glad u are feeling better having a chemo break and hopefully you can enjoy a normal Xmas ...don't know quite what the " normal" means really with this bizarre disease but eat drink and be merry comes to mind !!!!
Sending hugs xxxxx
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Hi ladies, just wanted to let you know that my recent MRI revealed collapsed discs in my neck which apparently aren't cancer related. I'm not sure whether this is right as it seems a little too coincidental to me but for now i will take it. it also showed up the deposits on my neck that the ct scan showed but still dont know whether they are new or have alwys been there. from now on i will ask for the ct scan to onclude my neck so at least we'll know what we're up against....just terrified they are heading towards my brain. I would love a release from all this worrying. i am trying to be positive but its hard, as you all know. Your reassurance always seems to get me through. Thank you all. x

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Hi Marirose,
Been off the forum for a week or two so only just saw your news. Sorry you had to move from taxol when you were coping so well on it. I have heard that Fulvestrant can be quite a sore injection.
As regards back pain etc I was absolutely pain free on Cape for the three months before I found out it wasn't working. However, I had loads of aches and pains when it was working. So for me anyway, pain isn't necessarily a bad sign. I look on it as the drug getting to work on the cancer. Maybe, this is what is happening with you. Hope you are sleeping better. (((hugs))) xxx
.
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Thanks for your good wishes

I have been in pain since my injections the bum is really sore but I got a pain around the stomach and lower back the chemo was a doddle compared to this I felt so good even the hair loss didn't bother me I still had a covering after 7 cycles and my mobility was so much better now I have gone back in a short time. But I will plod on and find a way to fight it may start doing my physio excercises again I have not done them while onTaxol.

 

Again thanks for your concerns love and (((hugs)))  xxx

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Marierose - so sorry to read of all your problems - you are definitely being put through the mill at the moment! I do hope your new treatment, even if temporary, sorts you out.

 

Hugs and best wishes.

Barton.x

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Marierose, posted on or skinny thread but must have misread. I When you said hormone treatments werent working for you i thoght it was because you are er/pr- but now i see you are er+....at least tht means you have things to 'go at'....try everything they offer you. I was going to until this wretched thing turned from positive to negative!!! i' m sure something will work while you aqre having your chemo break. Lots of love. xx

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Marirose, That is a mixture of results! Plus a sore bum and confused head. I would take a few weeks and give the skin mets some healing time. Meanwhile I would ask about Ibrance (palbociclib) and see what you have to do to get it! Fight for it!

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Hiya marirose
Sorry your new chemo isn't doing what it says on the tin ..you know we sort of get used to our treatment plans and side effects ..a bit like a pair of comfy slippers but your oncologist has your best interest at heart and you are probably needing a chemo break to rest your body of the toxic stuff.
Faslodex I think is a drugs funded hormone in the UK ..so you are a special person getting it !! my friend in Australia has been stable on it for quite some time so fingers crossed for you.
It means you get to keep your hair a bit longer too !
Have u asked about a clinical trial of ibrance as you might make the criteria of failed chemos and hormones etc etc.
Anyway ..sending you some hugs and will make u a nice Bailey's latte and lemon drizzle cake at cyber cafe .
Carolyn xxxx
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Hi Marirose , sending oodles of cyber hugs.
M xxxxxx
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Hi Marierose, sorry to hear about the progression in your liver, i get what you mean about mixed feelings, how can one area be doing well and the other not so well!!
You sound like you're getting your head around it a bit now though which is good.
Sending you a big cyber (((((hug)))))
Janette xxxxx
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Hi everyone

Just to let you know I got my CT results Wednesday mixed feeling at the moment I have had significant reduction in Lungs 11mm - 8mm no sign of other involvement but considerable increase in Liver mets largest being 38mm - 58mm.They have taken me of chemo as my bloods were dropping and I have an ulcer on my skin mets and they would not heal if I remained on it.

So now I am on Fulvestrant (Faslodex) because I am recepter ER+ injections in both buttocks for 2x3 weeks then monthly and I have got to hope that works.

I was annoyed angry and anything else you can think off but I have settled down now with my sore bum and head. I will take it full on the chin or in my case derrryair

 

Love and (((hugs)))  xxx

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Stesshead, how did scan result go? Maybe i missed your post.

 

Marirose, hope things are going well for you? FF  at my hospthey are so ever run in the mri dept that they are now running clinics every Saturday and on  weekday evenings...for ever!

moijanxx

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Hi all

I went for my review with the onc this time it was another consultant who is standing in for mine. She was lovely and very helpful but she said she was sorry she didn/t have the results from the CT scan. She said they were having trouble with the radiologist's there is a shortage and they have had alot of mistakes and errors so now it is taking 2 weeks for a proper analisis of the scans. So I suppose that I will have to settle for that you never know if they are fobbing you off.

 

So I have to wait for 2 more weeks now still getting the treatment that is making my hair go very thin but also making me feel quite well.

 

Love and ((((hugs))))  xxx

 

Stresshead good luck for Friday

 

Good luck to others awaiting results

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Thank you ladies for your best wishes. Already my mind is in overdrive about the mri. My neck pain shows no sign of abating so i have convinced myself its bad. As you say, i am best knowing in the long run. Just have to keep crossing the old fingers for a little longer. X

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Hi Stresshead,
Great to hear things are stable. I can certainly understand where your husband is coming from but I think you are right to go for the MRI rather than have your imagination running overtime. Best wishes xxx
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Great results ladies!!

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Hi stresshead

Good news and puzzling news I have posted on our skinny thread. At least you can have a little celebration tonight. The chemo break may do you good the treatment stays in the body a long time I still got cape reacting on my hands and feet for a while and those TM's are pretty good.

 

Love and ((((hugs))))  xxx

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Stresshead xx

glad your onc is looking afterouxx and i understand about the mri...these things happen for a reason, so you may be glad to get those results tooxx

hubby is prob worried you will be more worried....me? I think its good to know so it can be tackled...but we are all differentxx

 

i wanted to get off this chemo..even tho its working very well..but we talked about it and unless i am too exhausted or it stops working he is keen to keep me on it!

 

byw your tms are better than mine! Mine are 133, but were over 1000 in June!

 

have a lovely day

 

carolyn... Have a kit kat waiting for when im able to open itxx!

 

Moijanx

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Hi Stresshead and Carolyn,

 

this transmission comes straight from the MDU where Miss Tricky Veins here is cannulated and having her treatment.

 

as its half term was a little concerned as they have less staff on but after Sorting out my heat pad and chair, i leapt in the sink, and was very lucky to spot a cns/teacher who got the needle in very quickly.

 

then a lady came round with sandwiches..feel very blessed.xx

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Hiya Stress head
Glad to hear from you ..scan is maybe a bit better than you were worrying about ..it sounds like u need a chemo break though ..the body can only cope with so much toxic stuff.
Carolyn xxxx
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 Hi Ladies,just wanted to let you kmow that my scan results showed i am stable...ish. There is a 3.5mm node on my neck bt as that area hasnt been scaned before they dont know if its new or has always been there, but it certailny wouldnt cause the neck/skull pain i've been having. My onc thinks they are unconnected bt offered me an mri to pt my mind at rest. My hsband didnt want me to have it but i have said yes.....beginning to think i should have left alone while the news is good though?? he mentioned my groin, which is a new one, but wasnt concerned at all. My latest |TM had aslo gone down from 41 to 31. So, at least we can hopefully have a relatively good christmas.

Moijan, so pleased your results were also good. I am on a chemo break (not my doing) and it is very scary.I think i wold rather know i am on something that is continually working to hold this crap at bay. I do understand though that my onc did it to give my bone marrow chance to recover because he said once that goes kapput its the end of treatment. I'm sure your onc is monitoring you carefully...just try to enjoy your results for the moment.

Lots of love to anyone else awaiting scans/results. xx

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Great news Moijan ...let's hope you can have a little break soon though ..maybe at Xmas time .
Calling Stress head ...where are you? We are all waiting to hear from you.
Hugs xxxx
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Dear Moijan

Great news Eribuli is working for you and that is the most important thing. It would be great if you could get a break could they work one out for you although I feel when I took a break with cape it caused my progression. I now will be waiting next week to see if this one is working. I cannot plan Christmas away in France until I know what will be happening in the next 2 months.

 

Love and (((hugs)))  xxx

 

 

 

stresshead I am waiting for your results (((hugs)))  xxx

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Great news Moijan.....stable mabel!
Hugs Janette xxx
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Moijan So pleased to hear your good news though I wish you could be free. Hugs B xx

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Thank you Waffles....xx

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Hi Moijan,
Great to hear Erubulin is working well for you. xxx
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oh sorry ladies...had a rush job today..flitting about like a flea n a fit.

 

Scan showed another reduction in met size and also my tms have fallen by 980 since end of June!

 

however, the onc wants to keep me on it for as long as it works for me! Very disappointing as im needing the freedom!

 

if only everything could just vanish💥

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 Was just checking in...hope all of you get good results...Will check again after work! FF

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Best of luck ladies
We are all holding your hands !!!
💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜
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stresshead Moijan and anyone else getting results today

Sending best wishes for good results ((((hugs))))

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Hi FF

 

I get an Mri every three cycles on Eribulin. My onc puts on the form...to be done the week before...the appt.

 

our hosp is overwhelmed with mri now as is the investigation of choice for many people. The department have just decided to run clinics every Saurday and every evening .....for ever.!

 

i think its because there are so many drug trials at my hospital. The chemo days/chairs are all booked up too!

 

Moiijan

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Hi FF

The onc normally requests the scans and then we normally wait for the appointment to arrive in the post. This one is because they had a cancellation and it must be that the onc had decided to ask them to get me  in before my next appointment with him. He really has been great for a stranger to our hospital and he is only a standin for my orginal onc who is away on maternity leave.

 

Love and (((hugs)))  xxx 

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Do your hospitals just call you out of the blue and tell you when your scans are? Over here on this side of the pond the doctor gives you a script with orders on it. You then call and schedule your own appointment for them. I always make my next Dr appointment before I leave then go home and make s a for 2 days before. My doctor is located in the cancer center which is attatched to the hospital. If she doesn't have the results she will walk through to the hospital and get them. If she doesn't like the report she will then look at them herself. This is how I get them so fast. FF

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Well would you believe it I have just had a phone call for an appointment for CT scan on Saturday  it's for 4 o'clock how great is that. So hopefully I will get results a week tomorrow.

 

Still sending best wishes to those awaiting results (((hugs)))  xxx

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Dear stresshead and Moijan

 

Thinking of you both for good results tomorrow sending good cyber vibes and ((((hugs))))  xxx

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Thanks Stresshead for the birthday wishes. Yes I had my original dx in Oct 1995! Mets in Nov 2005! I was 41 when I started with bc now 62!

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Hi Marirose, Wednesday is D day for me too! Thank youxx

 

Stresshead..I almost never take my other half to the hospital because he lives on his nerves and i find my close friends better...they take notes for me and ask nursey type questions if needed. I once had a minor op and my partner...paced up and down all the time i was in theatre...really, I end up more stressed.

 

he drives like we were on one of those helter skelters and rushes up and down the stairs at home, really not a 

calming sort of guy! So....there you know it all nowxx

 

 Moijanxx

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Dear Karen

If you have found yourself looking on this thread Good Luck for Thursday will send you cyber positive vibes too.

 

Love and (((hugs)))  xxx

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Dear stresshead 

Good luck with your scan results I will be sending you positive cyber vibes while I am sat having my chemo on Wednesday. I do hope that pain in your kneck will soon sort itself out and give you some relief.

 

Dear Moijan

You didn't say when you get your results for the MRI but sending you positive cyber vibes 

 

Anyone else awaiting results good luck 

Love and (((hugs))) xxx

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Hi ladies, belated birthday wishes to FF and well done on scan results...i know they werent perfect but stable is good. I had no idea you have been living/dealing with this crap for 20+ years (or did i read that wrong). I'm so glad you are more positive about your new onc.

I hate this living in 3 month blocks, from one scan to another and often think it would be nice to have them every 6 months bit i still think 3 is best, i';m sure i would spend 6 months worry ing instead of 3!!

I have my results on Wednesday...my husband has just clicked on that its results day (the only time he comes with me is for scans and results) and that i amnot expexting good news because of this pain in my neck and now he is 'on the floor'. I know it is very hard for him but just when i need some support and 'geeing' up it seems to be me doing the supporting. I dont tell him things because i know i will have him miserable all the time which puts lots of pressure on me. Fortunately i do have brilliant friends who i can off load on to.

Moijan and anyone else waiting for results.......all my love. xx

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Oh no, I am the one who opens all the boxes and takes some of the contents, also i just love putting the boxes back in obscure places...they love me!

 

Moijanxx

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Arnt you a bit old to be playing with Barbie dolls and action men ?
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Yes, i thought it woeld appeal to you!

 

lots of love am off to sepnd ALL my money in toysrus

 

Moijanxx

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Oh okey okey ......we can also do a conga wearing pink tutus and purple sparkly shoes as well if it helps !!!
Carolyn xxxx