Procedure for inserting gold fiducial markers prior to CyberKnife

HellieC said:

Thanks for thinking of me, Ro

Thanks for thinking of me, Ro. The second treatment went well, with no travel problems.  I asked the radiographers about the pain and they think it could be a sort of "tumour flare" as the tumour becomes inflamed by the radiotherapy.  I had the pain again on the way home, but was well prepared with water and painkillers this time.  I have added nausea to the side effects now!  I remember the nausea from my original radiotherapy but for some reason didn't think I would get it this time as the area being treated is so confined.  It's been a bit miserable over the weekend, but this morning, thankfully, seems to have eased a little.  I will be off for my third session in a couple of hours so we'll see how it goes this time.

I hope you are feeling well and not getting any effects from your treatment?

Kindest wishes
Helen xx

So sorry to hear about the pain and nausea after the second treatment.   I guess because the tumor is so close to the sciatic nerve the tumor flare is affecting the nerve.   The nausea to me would be worse than the pain.   I remember my nausea from the original radiation.  I have such a sensitive stomach.

I hope you were prepared with pain and nausea pills after your third treatment.  Riding on a train with nausea would not be fun.  Maybe crackers would help, too. Only two more  treatments to go.  Hang in there.

I am recovering  from a sinus infection.  I have a cough especially at night.  Trying to sleep in the recliner, but the cough wakes me up.  I have had only one good night sleep since last Monday.  I do not think I had any side effects from the radiation, so that is a good thing.

You  remain in my thoughts and prayers.  In peace and caring.

HellieC said:

Had CT and MRI planning scans pre Cyberknife

I had the CT and MRI planning scans pre myCyberknife treatment last Tuesday.  It was a long and tiring (and disorganised!) day, with a combination of the usual excellent front line and abysmal admin!  

 

I was told to get to the CT scanning dept at 10 am for my 11 am scan.  We thought about staying in a hotel, but the London prices are so high at the moment (£200+ for a room without breakfast) so we decided to do it all in one day.  So we dutifully arrived at the appointed time, only to be told that they didn’t know why I had been told to get there at 10 am!  Doh!  We had just spent double the usual price on train tickets to get on a peak time train early enough to get us there for 10 am.  We were not best pleased as we could have caught a later and cheaper train had we known they didn’t need me until 11 am.  Then, while I was waiting, I had to toddle over to the other building, to the outpatients’ dept, to see my consultant to sign the consent form for the procedures.  We waited in the large, multi clinic reception area and then saw an assistant was wandering round with a piece of paper shouting “Mrs Ellie” or “Mrs Elleh” or something similar. No one responded, so she took the piece of paper over to a colleague, who looked at it and shouted “Mrs Clarke” – of course I answered.  The first woman had been, in a very  thick foreign accent, shouting out the title and Christian name, rather than surname.  She had the cheek to try to blame me for not responding, so I told her in no uncertain terms that I did not appreciate her trying to put the blame on me and that my name was not Mrs Ellie!  My consultant then took me through the Cyberknife procedure and the possible side effects (damage to bowel, sciatic nerve, possible insufficiency fractures of pelvis etc etc).  It can all be very frightening, but they do give you a written sheet to take away which shows how likely these effects are and, for me, most of them (except the bowel, which is lying adjacent to the tumour) are fairly uncommon.  I am putting huge trust in them to manage the dose so it hits the tumour but spares the bowel.  I hope my trust is well placed!

 

The CT scans were fine.  They did two sets, one with me lying on my back and the other on my tummy, as they think that they may be able to get a higher dose of rays to the tumour through my back and wanted to compare the two options. I didn't have a mold made, but they did use a sort of mattress which they can put air into, to sort of snuggle around my legs to keep them in the same position.   Then we had a break and went across the road for a sandwich and I took my valium ready for the MRI scan.  I was told to get to that for 1 pm, but they left me sitting there until 1.30 pm and then came and got me changed and ready and I then waited another 15 mins to be called in.  They did two sets of scans again, all very unpleasant as although their machine is newer than previous ones I've been in, the noise from it is considerably louder, so even with both foam earplugs and ear defenders it was still like having someone using a very loud road drill beside your head for 10 mins at a time, repeated 4 times!  Even with valium I barely managed to deal with it - I have never been so pleased when something was over!

 

After that, we were finished, so we walked to the nearest Underground station and caught a train back to Victoria and got on a train for our home town. But the train went nowhere as the guard hadn't turned up!  So everyone on the train had to dash over to another platform to catch a different train that would get us part of the way home.  To cut a long story short, after two further changes at diferent points down the line, we managed to get home! 

So not the best of days, but at least it is all done and I got to sleep in my own bed at the end of it.  The actual treatment starts on Wed 1st Oct.

 

 

 

Dear Hellie,

Such a brave girl, what a time you have been having. Hospital outpatient departments are so impersonal and have a very peculiar culture sometimes. I really could feel your experience as you described it. I have not been on this discussion board for a while as I said to Ro but I always think of you all. Hoping your treatment  achieves the best for you.

Loving thoughts,

Georgia

HellieC said:

All finished!

Treatments all finished and it was a smooth day, with no delays, thank goodness.  The trains were very busy as it was a Friday. 

My care can now be transferred back to my local oncologist, who will perform a follow up in 4 weeks and then an MRI scan in 3 months to see if we have had any response.  SO the waiting game begins again.  But at least I can put it to the back of my mind for a while and get on with life!

I didn't get a certificate, nor to ring a bell!  But when I read out your post to my husband, he immediately went off and produced a certificate for me and brought the bell which we keep by the bedside if one of us is poorly, so I could ring it!  We tend to forget about the strain on our partners but he has been marvellous throughout and we had such a laugh together about the bell and certificate this morning.

I love that saying "Luck is not getting what you want, Luck is surviving what you don't want".  So many people use the word "brave" to describe what we go through.  But bravery is something a person exhibits when there is a choice!  I prefer to think of myselt as stoic!

Have a good weekend, Ro and I hope the cough continues to come under control with the new meds.

Kindest wishes
Helen xx

What kind of follow up will you have in 4 weeks with your onocologist.  You mentioned a MRI in 3 months.  Do you know what kind of response to look for?  Will the tumor just not have grown?  Will your pain be gone?  Wish we knew what to expect.  But as you said....the waiting game begins again.

Your  husband sounds like quite a jewel.  To make you acertificate and bring you a bell was very special.... for a special lady.  I am glad your husband, too has been a marvelous support through everything.  My husband has been terrific.  I know the strain is hard on family.  

Hope your pain is gone now from the treatments and the nausea is gone, too.  

My cough is some better,but still wakes me up at night.  I had my annual physical today, and he suggested a different cough syrup, but I will just keep taking the two medicines I have.  It will be two weeks since I finished the treatments, so I hope the cough will be better.  I have had a cough for a year, so I don't think it will go away completely since the node  is not going to go away.

You and your husband remain in my thoughts and prayers.  In peace and caring.

Double Whammy said:

Good job, Helen!

So happy this part is over now.  Both you and Ro are amazing - and I find it reassuring that there are treatments other than chemotherapy that can help you both. 

I'll be waiting with you both.

Suzanne

Thank you Ro and Helen for sharing.  I have learned so much.

The husband of a co-worker and friend has esophogial cancer and after everything he went through, a recent biopsy discovered his cancer is back and he is too weak for chemo. They will probably go the radiation route and I asked her if either of your methods was possible.

Thank you for sharing.

HellieC said:

Thanks, ladies

Thanks, ladies for all your good wishes.  I am starting to feel better and the nausea has practically gone now, although my eating habits are still a bit "picky".  I am still rather achy and tired, but I remember that from my original radiotherapy in 2010 and I know that this will go in a couple of weeks.  The tumour pain, which had stopped (due to tamoxifen) just before the Cyberknife but which then flared up again when I had the treatment, has settled down and apart from the odd little bit of sciatic type pain, when I am tired in the evening, it is all but gone.  No painkillers required during the day now.

Ro - I don't think we know what effect we are looking for on the scans!  It is possible that this treatment will completely kill the tumour, but whether it will disappear completely, or whether some scar tissue will be left, I'm not really sure.  The sciatic nerve sits adjacent to the tumour so we are definitely looking for it to have shrunk away from there to stop the pain. I guess if it shrinks but doesn't disappear, then a PET scan might be one way to see if there is still active tumour cells or not.  But whether they would do one, I don't know (there are very few PET scanners near where I live and their use tends to be limited to making diagnoses prior to treatment, rather than follow up afterwards). So I guess we will just play it by ear, see what the first MRI scan shows and then decide where to go from there.  I would not be surprised if the full response wasn't seen at 3 months, as last time, it was 6 months before we saw the full effect, so I have to bear that in mind!

So pleased that your cough has eased and you can get more sleep. 

Kindest wishes
Helen x

thinking of you and wondering how you are feeling.  I hope your pain and nausea are gone and you have more energy.  My cough is still present,but not as severe as before.  It has been 3 1/2 weeks since I finished my radiation, so I would think the" flare" has gone away.  I am more tired, but don't know if it is the medicine, not getting a good night's sleep, or the radiation.  I just go take a nap when I need to.  We will leave next Saturday for our two day car ride to Florida.  This has beenabeautiful fall with the leaves on the trees turning yellow, oranges and reds.we still have not had a frost here which is unusual.  

Hope you are doing okay.  In peace and caring.