MRi Scan Results

[Juliana]

And the winner is.....

Hi all,

Had my MRi on Tuesday and was told that it may take 2 weeks for results to come through. So Friday I ring and start chasing it up (as you do) and guess what - they were in already! My specialist nurse called me back and said....'do you want me to tell you now...' and feeling brave I said ok. She then told me it wasn't as bad as I thought....which I had mixed feelings about because the word 'bad' was used anyway.

Basically:

My lung tumors - largest one measures 10mm (thats 1mm less than the Nov09 scan) = NO CHANGE

My tumor around the SMA - NO CHANGE (she then went on to say that even my oncologist may start to consider it as scar tissue, instead of tumor now it hasn't changed size in over 6 months)

My kidneys (where I've been getting constant ache for 3months) - NO DISEASE

My liver (again, ache and uncomfortableness) - NO DISEASE

My stomach & intestines (aches/pains constant discomfort) - NO DISEASE

The 'bad' thing was a new nodule measure 2.7cm to the right of my Celiac Artery. She said the MRI was extremely clear, and they were pleased with the results and quality of the scan, and are more than happy to proceed with this type of scan in the future. What they will do is go back through my CT scans to see if this 'nodule' was visible at all, to give them an idea of whether it's new or something that has been there a while.

The mystery is....what is causing all the issues I am experiencing at the moment? Even with the addition of this new nodule - there is nothing on the scan that shows the reason for all this pain and discomfort. I have an appointment for Monday to see my oncologist where we will discuss this further, I may also be put in contact with the palliative care team to discuss pain management and medication combination to see if they can help with my symptoms.

Before finishing the conversation I asked her if she had heard of CV247, initially she said no, so I told her the story about the man and the vet. Whilst on the phone she checked it out online, and said that she remembers reading about it somewhere - she also said there had been trials, but thought the trials hadn't really been sufficiently and extensively done as the subject amount was small and mostly prostate cancer related. We discussed the similarities of it and Aspirin and she is going to speak with my oncologist about it and see if he thought it was worth a try.

All in all, I am extremely pleased with the results - even though it doesn't explain why I am experiencing the back/stomach and abdomen pain, but knowing it isn't cancer related is a massive relief.

I will update after Monday's appt - watch this space!

Juliana

[Ellie]

So very pleased for you, Juliana! Overall, it is more good than "bad" news, although you are obviously still worried about getting symptoms from something or somewhere.

At least the majority of things they checked haven't changed significantly, so that has to be good!

Keep positive, keep fighting and enjoy every new day.

Love

Ellie

xx

[Nardobd]

Wow, Juliana, I'm so pleased that the news wasn't as bad as you thought, albeit that you haven't discovered the cause of your symptoms.

I'm sure that between them the medics will work it out and make you more comfortable. I look forward to hearing the outcome of Monday's appointment.

Nicki xx

[emma]

Hi Juliana, I'm so pleased to hear your good news and I hope your appointment today goes well. Thank you for taking the time to reply to my thread about my dad. Take care Emma xx

[Juliana]

Hi all,

I had my appointment yesterday and it went well.

Same as the conversation on Friday really, as my oncologist hadn't seen the scan himself, just the report. However the report was there for me to see, and at the beginning it states MRI scan compared to previous CT scan, and even though it highlights this node on the celiac axis, at the end of the report it states: no progressive disease, cancer stable. This leads my oncologist to believe that the node had been there all along, but the confusion is over why it wasn't mentioned in all the previous CT scans, so he will speak with the radiologist today and try to clear things up. Overall he is pleased with the results, but concerned as to why I am experiencing all these aches and pains.

On reading what happened to 'chinup's Mum I asked if tumors in my intestines could be missed on both ct and mri - to which he said of course they can. The reason being is that tumors in the intestines are not necessarily nodes/lumps......they can be a thin coating, flat on inner lining of the intestine - but can cause narrowing of the intestine and therefore abdominal ache/pain during digestion etc. He also advised I could be experiencing adhesions as they are quite common post any gastro/intestinal surgery, along with kinks etc - so will discuss with others this morning the best way to investigate this - probably a barium contrast meal and xray (so much for avoiding radiation!).

As for the back pain, no idea.

Anyway - all in all I am chuffed Just need to get to the source of this pain and discomfort - and stick to the regime!

Juliana

[clair2305]

Juliana

woop woop, great news for you, I am so pleased. hopefully an appointment with palliative care will help get your pain managed as well.

Best Wishes

Clair

[LilyG]

Such wonderful news. Funnily enough Trevor and I were discussing about how sensitive we now were to aches and pains and how in the past we may have shrugged them off no matter how painful (although ironically that's what he was doing 3 years ago when they diagnosed him with kidney cancer and removed an 18cm tumour).

I am so pleased for you Juliana.

We are trying to get a break to the Isle of Wight booked which will be our first away for what seems like an eternity. For whatever reason we have been advised against flying so I am madly envious of those of you who've enjoyed a bit of sun.

CT scan has been booked for 10th March with results on 18th. Hoping that the pains under the ribs, swelling in the feet and hands and headaches are red herrings and that the 'cysts' that were apparent at the last scan have disappeared.

L

[Nardobd]

That's good news Juliana. Hope the consultant manages to get the pain sorted so that you can relax a bit.

Lily, the IoW can be lovely this time of year, so enjoy yourselves. Good luck for the scan and results. Don't forget to let us know how Trevor is getting on after his appointment with the consultant.

Best wishes

Nicki x

[Juliana]

Hi guys -

A quick update.

After my appointment with the oncologist I was awaiting results of a meeting which reviewed my results, my symptoms and the best way to move forward. My oncologist rang 3 days later, stating that a barium meal was decided upon and that an appointment would be put in for me.

Since that time my symptoms have gotten worse, I've been in agony and have had the palliative care team visiting and jigging my medication about (I am now on 37mg patch of fentanyl and have had to increase my morphine to every time I eat - and every time I need it basically. Also I take a mild sedative to go to bed, not to help me get to sleep but to keep me asleep even if I experience pain) which has improved it a little. The worrying thing for me was I was getting blood each time I passed stools, after speaking to my specialist nurse we thought it may have been internal piles (joy), however one one occassion I decided to examine the stools instead of flushing (I can tell you are enjoying this....) and noticed blood throughout it all. This caused some stress and I contacted my specialist nurse again, she said she would chase up the appointment for me.

Here is the time scale:

Oncologist appointment: March 1st (discussed barium and said it would take a couple of weeks)

Oncologist phonecall advising of barium: March 4th (confirmed that appt would be made)

Blood in stools: March 11th

Appointment for Barium Meal: April 7th

Baring in mind:

I have had trouble eating food since December

It has gotten worse as the weeks have progressed to the point where I am in such pain I am on the floor and can't even change my baby's nappy, on the edge of my pain threshold and close to calling an ambulance (I'm no lightweight - I've passed a 10cm stent through my bileduct/gallbladder!)

MRi can't determine the cause of pain so some other form of scan is required

I have to wait 5 weeks....???

Is it me being unreasonable here, I am sure I read somewhere that cancer patients were supposed to have scans or be seen etc within 3 weeks of reporting symptoms?

And yes, I have rung my specialist nurse asking for her to ring me back, but no phonecall yet.

Juliana

[clair2305]

Juliana

I don't know if you have the letter with the appointment for 7th April (basically with the dept's telephone number on), but I would (and did before Blue's diagnosis) ring the department and see if they can bring it forward, say you'll accept a cancellation (if you can) and basically be a pest.

As for the turnaround times, I thought it was two weeks for people suspected of having cancer, but ones you are diagnosed I don't know but no you are not being unreasonable, not at all.

If you get no joy from the department or your nurse, maybe it would be a good idea to get family round to look after the kids and call an ambulance, making sure hubby has your appointment details with him, etc so that once you get there, they can arrange it more urgently. Yes 5 weeks is an unreasonable time to wait.

Let us know how you get on.

Clair

[Ellie]

I feel for you so very much, Juliana. How on earth you can cope with what you are going through while having to look after a young baby.....you certainly must be a very strong person. Even so, no one should have to go through all that pain and worry. I hope you will get seen much earlier than is planned at the moment.

Wishing you the strength to keep going and all the luck you need to get this sorted quickly.

Love

Ellie

xx

[Nardobd]

Hi Juliana

Yes, you are being asked to wait an unreasonable length of time. However, I'd be wary of calling an ambulance - I tried that with Ted once and they decided to keep him in hospital! We ended up signing out AMA.

The two-week rule relates only to people referred by their GP as being suspected of having cancer. However, if you have a caring GP s/he might be prepared to try to hurry the test along by contacting the hospital and saying that it is impossible for you to wait five weeks.

There are two other options, both of which have worked for me in the past:

1. PALS - we've discussed this before, but if you need a recap I can give you the info again.

2. Ring the hospital and say that unless you get a call back within 24 hours you're going to contact the press. Of course, you can forgo the call and just contact the media. I'm told that the Daily Mail is particularly keen to criticise the NHS and if you pick a slow news day then they are likely to emphasise the human interest stories. Local media such as the daily local paper and BBC radio station are always a good bet too.

Hope that helps. Let us know how you get on.

Nicki x

[clair2305]

Juliana

yeap, I agree with Nicki, maybe don't call the ambulance, but yes the Daily Mail do love those sorts of stories, so a bit of persuasion may be what's in order.

Let us know what happens.

Clair

[Juliana]

Hi guys,

Had a call from my specialist nurse who explained the wait with regards the scan.

Ideally they would have liked to have scanned me earlier, but the radiologist who has reviewed my MRI and CT has requested she perform the x-ray as she has the most experience with my insides (makes sense) - but she is off for a month, hence the delay.

My nurse did consider approaching another radiologist who has scanned me in the past to see if he could fit me in, but he was admitted to hospital himself today and so all his appointments have been suspended for now. *sigh*

So I guess I will have to wait and that's that.

Other news - my blood tests came back:

Kidneys - ok

Liver - ok

Haemaglobin - ok (so no internal bleeding worries)

White blood cells and nutrafils - normal

Vitamin B12 - 2000+ basically it's off the scale....it was high last time, 1900 and something, but now its off the radar. They have no idea what this means, especially as I am not eating eggs/meat/fish/dairy which is what you absorb the vitamin from. It is found in vegetables, but apparently the body cannot convert and absorb and most veggies/vegans have to take supplements or they will become defficient.

I thought it may have been the cottage cheese and flaxseed oil regime, but I haven't done it for 1 month due to being sick last time I ate it (its put me right off).

Also my CA19-9 is now 30.

Again she said its within normal range, but this does worry me as this 9 months it has steadily increased, and my last reading was 19 - making this the most substantial increase and this is within less than a 3 month cycle.

My body is very sensitive to change, when my bile ducts used to block - my bilirubin level would only have to change from 7 to 13 and I would get pruritis (itching all over) and not mildly - it was unbareable! And often they wouldn't believe there was something wrong because my levels were still classed as normal - it wasn't until they could see me turn yellow would they do anything about it.

Anyway - I know some of you guys would love to see CA19-9 at 30, but for me it feels like my body is trying to tell me something.

Thanks for all your replies and suggestions, I really appreciate it. This week has been particularly difficult as my little boy picked up the noro virus whilst we were at hospital last week, getting his eyebrow stitched back together (nasty). He has been poorly and miserable, and now my little girl has got it....I am absolutely shattered.

They are both down grandparents tonight in the hope I can get some rest - stomach and back pain permitting that is!

Juliana

[Guest]

Juliana,

Must be very difficult to 'manage' the illness and keep your young family going too. I follow your story with absolute admiration.

I know when you're in pain and exhausted it must be difficult to keep 'hassling' the nurses for movement but really I've found that that's the only way to get things progressing. I threatened to go private alot with my dad when faced with weeks (and also knowing that catching any changes early can make a real difference) and that seemed to get things moving again - the doctors at my local and regional centre seemed so adament that we shouldn't have to pay to have access to tests or to expediate the process. Keep hassling them for a quicker return and if all else fails I'm sure they'll listen if you contact the Daily Mail. Makes me sad for the people who are not strong enough to (or don't ahve people around them) to fight their corner. Feels unfair. But then it all is isn't it.

Take care - try and keep as rested as you can.

C

[Juliana]

Hi all,

Thanks for the advice and the support x

Will try my specialist nurse on Monday and ask her about maybe going to Cardiff for a scan, or if someone from Cardiff can come over to Swansea.

Have had an awful couple of days to be honest, not ashamed to say the past 24hrs has been mostly spent in tears. It's just all getting too much for me and I feel I am at the end of my tether.

With everything that has happened, my little boy falling and needing stitches, then having the norovirus and my little girl and husband catching it, my continous failing painkiller search and lack of sleep etc. My 2 little ones have been looked after by both sets of grandparents because I have been too unwell to care for them properly breaks my heart. Makes me feel like a part time Mum.....and I don't want to feel like that - I am the one who is supposed to be there for them when they are poorly, cuddle and support and kiss it all better. That's the cruel thing about this disease, not only do you have to deal with the knowledge you will not be there for them when they are growing up.....it takes it away from you bit by bit, making you watch as it all happens infront of your very eyes.

The palliative care team have now put me on 50mg Fentanyl patch, and I have Abstral 100mg tablets that I place under the tongue - started with 1 and now up to 4 at a time as and when required. I haven't held much faith out for the tablets as they are supposed to be fast acting, and I hadn't really noticed a difference. However, I took the 4 at a time for the first time tea time, and again nothing, but an hour later I noticed a difference.....4hours later it feels like it may be wearing off - so will try some more and see how it goes.

Have had some side effects with the fentanyl though:

Dry Mouth

Overwhelming feeling of being hot

Sweating

Problems passing urine

Vivid anxiety related dreams

Restlessness bed time, fidgity, can't unwind/switch off (great that's all I need!)

Some nausea

Possibly some colic/loose stools

Mild itching

I have now been subscribed some diamorphine to be kept at the house incase the pain peaks and is not dealt with by the fentanyl tabs etc. I have the district nurse number, as she will have to do the injection.

Not sure what the difference between diamorphine and morphine (oromorph) is, I am guessing a combination of opiates.....actually, I have just looked it up online - diamorphine aka heroin. Can't believe I wasn't 'told' this by the nurse and dr I spoke to today....no wonder they said to me 'are you happy with us to proceed with this...' and I said 'sure, I am desperate'. I even asked how quickly could I have another dose if the first lot didn't work....they must have thought I was a right druggie!

Just told my hubby too.....we are both baffled to be honest....

....Have read some more, and it does say it's almost exactly the same as Morphine, but stronger - still, my knowledge on Heroin has always been that once you try it - you are addicted.

Anyway....will definately NOT be using that number this weekend - not until I have spoken to someone about it.

Juliana x

[Ellie]

Dear Juliana

My heart goes out to you right now. It must be the worst thing, being in pain and not being able to care for your children. You've been so brave and positive but everyone has a breaking point and I truly hope you get the right help asap.

If I could send you some strength and hugs over the internet, I would do right now.

Love

Ellie

xx

[Nardobd]

Oh Juliana I'm so sorry to hear that you're in so much pain (both physical and mental) right now. I wish I could give you a hug! Instead I'm sending thoughts of strength and healing your way.

Now is the time that you need someone to stand up for you and push the NHS. I'm sure your husband and family will be only too keen to do so.

Another idea is why don't you contact PCUK to see if they can help, even if it's just with information/support/someone to talk to? You've given so much support both to the Charity itself and others affected by pc throughout the past year or so, I know that they will be very pleased indeed to do anything they can for you. If you want me to contact Alex or Salma and ask them to give you a ring please just respond here and I'll do so.

One thing you can get out of your head is that you're a "part-time mum". Despite your pain and anguish you're thinking of your children first. I would say that makes you very much a wonderful mum 24/7! So, their grandparents are enjoying looking after them physically but no one could love those children any more than you do. Give yourself a break!

Much love and care

Nicki x

[LilyG]

Hi Juliana,

I can't even begin to imagine how you are feeling either pain-wise or emotionally but it sounds desperate and I feel for you and your family.

If your kids are anything like mine, they quickly get used to Dad not doing what he used to but he is still Dad just a bit different; you are still Mum and always will be.

My life and the kids' lives are and will be so much richer for having Trevor around, albeit for not as long as any of us would like.

Although it isn't easy, try not to think of what you can't do; you have so much more to give even if it doesn't feel like it at times: a smile, holding hands, they are the things that make you.

You sound as though you have been through the mill but you also sound incredibly brave and inspirational.

My very best wishes are with you and I am hoping that you can get the pain alleviated very soon.

L x

[clair2305]

Juliana

you are, as Nicki says, not a part-time mum. I know only too well what the norovirus is like and unfortunately for us, Blue did catch it from me, it is says on the NHS website that it's highly contagious and I also caught it from the hospital. With all the other pain you are experiencing, I'm sure you wouldn't want to add norovirus to the list.

Now, I may be being a dummy, but are you or have you had MST (Morphine Sulphate tablets), because my heart goes out to you, your pain should be managed and from a partner's point of view, there is nothing worse than seeing your other half in pain and not being able to do anything about it.

Blue takes 120 mg of MST (tablet form, not capsule, didn't really work) twice a day and he also has the highly concentrated Oramoprh for top up. It took a while to get him to the right dose for him. He doesn't like taking the oramorph, has thoughts about getting addicted, but our GP said if you need it, you need it. He had tried patches as well, but they did not help at all. He very rarely takes the oramorph but if he is in pain, I am quite strict that I think he should take it, which I'm sure at times he hates.

take care

Clair

[emma]

Hi Juliana, I'm afraid I can't offer any useful advice but my heart truly goes out to you, you seem to me to be a fabulous mum and are truly an inspiration, as a mum of young children myself I can't begin to imagine what you are going through. Children are so resilient and I'm sure are being spoilt by their grandparents so don't beat yourself up about it. I really hope that you have some good news soon hun, you deserve it. Best wishes and love to you and your family Emma x