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Procedure for inserting gold fiducial markers prior to CyberKnife

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

 

Hello ladies. I promised I tell you all about the procedure to insert the gold markers into my tumour prior to the CyberKnife radiotherapy treatments.  I got back from The Royal Marsden Hospital in London (very famous cancer hospital here in England) yesterday evening.  Initially we were going to stay up there the night before and the night after the procedure, but the hotel was so awful (hot, air conditioning that didn't work, etc etc) that we cancelled the second night and came away straight after the procedure yesterday. I am feeling fine. A tiny little bit achey and sore where they put the needles in, but pretty much Ok apart from that. It was a fascinating experience. I am truly amazed at the technology used and the skill of the team doing this. I was pretty anxious, but they were so kind. The consultant was a charming Greek man who explained everything to me beforehand and I signed consent. They took some bloods and put a cannula in. Then, basically I had two sets of CT scans of my pelvis, lying prone (face down), one with and one without contrast. The "with contrast" was needed because after the first scan, they had a good look at the images and were a bit concerned that my sciatic nerve was very close to the tumour and they didn't want to touch it.  The contrast agent gave them a better view. While I was still lying on the scanner bed, they gave me some sedation and painkiller through the cannula, injected local anesthetic to my left buttock (where they were "going in") and then did the procedure, which was so fast - only a few minutes from start to finish. I could feel them pushing and a slight discomfort as each gold seed was placed, but really absolutely nothing to shout about. Then a dressing was put over the puncture wounds and I transferred to my bed and was taken back to the ward. I has to rest in bed for 4 hours afterwards, to be sure there were no complications or bleeding. Every single nurse and doctor was skilled and charming. So the next stage is an MRI scan and a CT planning scan next Tuesday.

 

ConnieSW
Posts: 1551
Joined: Jun 2012

I was hoping we'd hear from you today.  great that it went so well.  It is fascinating.  Don't you just marvel at the things science comes up with!

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Helen:

I am so happy to hear that it went smoothly for you and the staff was terrific with you.  It feels weird going home with a patch on your buttocks!   I will be thinking of you on Tuesday for  your scan.   Get some rest today.   Glad you are not back at that hotel!   

Thanks for letting us know how that procedure went.

Talk to you soon.  Hugs

 

Kathy

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

Thanks for the report, Helen.  My husband had seeds implanted for his prostate cancer radiation.  I cringed and felt so sorry for him because that was done via his rectum, as were the initial biopsies.  There is simply no dignity left when one has cancer, is there? Especially for those of us who have cancer in our reproductive organs!   

Hope the radiation does the trick and blasts the you know what out of that pesky tumor.

Best,

Suzanne

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Fascinating!!!  Thank you for sharing.  Will the "seeds" stay in your body forever?  I hope this takes care of your tumor

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

i am glad you are home and the procedure was not terribly uncomfortable..  Hoping you have a good weekend and everything goes well Tuesday.  I am glad you felt all the health professionals were kind and skilled.  Do you know how many sseds you had implanted? 

Since they did the CAT  lying prone, will you have to be in that position for the radiation?  I am glad they avoided you sciatic nerve.  You remain in my prayers.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Hi Everyone
Thanks for your good wishes.  The seeds stay in the body permanently.  I asked about them migrating over time and the interventional radiologist said that it does happen sometimes but that they are harmless.  Even if they migrated to the lung they wouldn't cause any problem because they are so tiny.

I'm not sure if the radiation will be delivered prone or not, yet.  There has been some discussion that lying prone may enable them to deliver a higher dose without damaging the bowel which is lying adjacent to the tumour.  I think that they will probably scan me both ways on Tuesday and then make their decision as to what is best once they've reviewed the images.  Lying prone and absolutely still for a long time is quite difficult, but if that's the best way then I will do my utmost to compy to give everything the best chance of success.  I don't know yet whether I will have a mold made or there has been some talk of an air mattress where they can let air out of different pockets within it.  Will report back after Tuesday's "scan day" and tell you all about it.

Kindest wishes
Helen 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Helen, 

i am glad to hear that the placement of the seeds wasn't difficult for you to handle and that the medical staff was kind. Let us know how you do with your Tuesday appt.. Hopefully, You will continue to do very well.

Warm Regards,

Cathy

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010
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.

 

 

 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Oh my Hellie!

What an ordeal.   I am sure you were so glad to finally get home!    Its bad enough to do the scan alone but to have all those obstacles on top of that!   Yikes!

Don't you just love it when they try to blame you for something that they messed up?   lol   But you handled it well!

I will be praying for you for your October 1st treatment.  

Kathy

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am so sorry your day was so long and disorganized.  I have never had an MRI, but I did hear they were noisy.  The noise must really be awful.  It sounds like you needed two...or three Valium throughout the day.  And probably a couple for your husband., too.  I hope the treatments go much better.  Do you know how many treatments you will need?

I will have my last treatment when you have your first.  I did not get any papers telling me about the stereotactic body radiation treatment, which surprised me.  Most places always have printed information to give patients.  I do hope the position you have to be in will not be too uncomfortable for you while you get your treatment.  How do you do in the prone position?  I can sleep on my stomach, so that position would not bother me, but I know it would bother some people.  

I do hope your treatments are as uneventful as mine and that they go well.  You remain in my prayers.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

What a long and frustrating day you had, Hellie!   Hopefully, the actual treatment will go much smoother. I, too, have difficulty with MRI's.  I always have to have a towel over my eyes; otherwise I don't think I can stand the coffin-like closeness of the machine.  The noise is terrible and rather intimidating.  I do hope that the actual treatment will be a breeze for you. 

 

Best of Luck,

Cathy 

Ro10's picture
Ro10
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Joined: Jan 2009

thinking of you today.  I hope all goes well today.  Hope it was an uneventful trip to and from the hospital., and things were  "organized" today. Wishing you the best outcome.  In peace and caring.

ConnieSW
Posts: 1551
Joined: Jun 2012

Projecting most excellant vibes to you from across the pond.  Feel 'em?

Tresia23's picture
Tresia23
Posts: 77
Joined: Dec 2010

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

 

 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello Helen:

I hope everything went well for you today.   Jyst wanted you to know I am thinking of you!

Kathy

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Thank you, ladies for your support and good wishes.  All went well for the first treatment.  The travel was uneventful up there and the treatment went well. 

They have decided to give me a total of 30 Gy ( 5 x 6 Gy), which seems to tie in with the case study I read of a lady in US with a similar situation of pelvic sidewall disease. 

The radiographers seemed pleased that the machine was able to detect all four gold markers and use them for positioning (apparently, sometimes it can only detect two or three or some have migrated elsewhere!).  The actual treatment took about 45 minutes and I had to lie still on my tummy for that time.  I was concerned about my colostomy, as lying flat like that puts pressure on it, but they placed the special mattress that they had shaped for me in place and it wasn't too bad (in fact, I think I might have dozed off during the last few minutes).

However, about half an hour after the treatment the nerve/burning pain that I have had from the tumour (which stopped a couple of weeks ago after 3 months of tamoxifen) started up again.  I wasn't expecting it and had not thought to carry water with me so couldn't take any painkillers (there are no buffet cars on UK trains to get any refreshment - you have to wait for a trolley service, which never comes on a crowded train in rush hour because the aisles are blocked with people standing up!).  It was quite bad, so the journey home was a bit grim, but once I was able to take some pain relief it was fine again.  I'm not sure whether is is the Cyberknife treatment that has aggravated the sciatic nerve (seems a very quick reaction to get it so immediately after the first session) or whether it is lying in the flat prone position.  I will discuss it with the radiographers on Friday before treatment number 2 ( will remember to carry water and painkillers this time!). I hope this isn't something they will be worried about, as this morning all seems fine and I am keen not to compromise the dose if possible.  I'll keep you all posted.

Once again, thank you for your care, concern and good vibes - it is good to carry these into treatment  and know that you're thinking of me.

Ro (my fellow Cyberknife warrior) - how are you doing?

Kindest wishes
Helen x

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

glad your first treatment went okay.  Sorry you had pain on the trip home.  I hope you do not have pain with each treatment.  I can understand your anxiety about lying prone that long with your colostomy.  I hope the air mattress continues to work for you.

You said you will have 5 treatments.  How often will you go?  How long is your travel time each day?  I am glad you are planning to take your water and pain pills along in the future.  I hope Friday's treatment goes well.   You remain in my prayers.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Thanks for your wishes and prayers.  My treatments are every other day, so I have the second one today, then a break over the weekend, then one on each of Mon, Wed and Fri next week. 

The journey takes about 2.5 hours each way, as long as there aren't problems (which there frequently are!). I go on the mainline train from the south coast up to Victoria Station in London, then change onto the Underground, then a 10 minute walk. I did consider staying in a hotel, but, to be honest, there's nothing like sleeping in your own bed at the end of a long day, so I am trying to get home.  But I will judge it as the days progress and if it gets too much, I will stay in a hotel for part of next week. 

The hospital is in one of the most expensive parts of London, with beautiful old houses.  I don't know if you ever saw a British TV  series made in the 1970s, called "Upstairs, Downstairs" about life in an affluent Victorian/First World war household, but it was filmed there and I walk past the street where it was made.  Just for fun, I looked up the price of the houses there and was astounded that there is nothing for less than £5M and prices from £8 - £12M are common! How the other half live, eh?  I was born and brought up in London, but prices have risen so much that I don't know how anyone can afford to live there now.

I'm so pleased your treatments have finished, Ro.  I do hope you continue to have no side effects and that the wait for the results doesn't seem too tiresome.  We seem to spend large portions of our lives having tests and waiting for results, don't we?

Kindest wishes
Helen x

 

Ro10's picture
Ro10
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how did your second treatment go?  I hope it was an uneventful trip home.  2 1/2 hours is a long trip each way.  Hope you had no pain on the way home.  Will be thinking of you Monday as you have your third treatment.  In peace and caring.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

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

Kaleena's picture
Kaleena
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Hi Helen:

Hope your third treatment went well and that you were not in any pain on the way home.   Thinking of you!

Kathy

ConnieSW
Posts: 1551
Joined: Jun 2012

This treatment and trip went well.  2 1/2 hrs is a long time to get home to your bed when you don't feel well.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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's picture
HellieC
Posts: 524
Joined: Nov 2010

Yes, I think you're right, Ro, regarding the sciatic nerve.  It is very close and I'm sure the treatment is jangling it and causing inflammation.  But it seems to have developed a definite pattern, which I can cope with - starts about half an hour after the treatment and lasts until about midday the following day. 

I agree with you about the nausea - that it much worse for me than then pain too.  Yesterday, I went prepared with mints, ginger biscuits etc and managed to keep it under control.  Although my eating habits and "fancies" are a bit weird.  One of my friends commented that I would be asking for a choc ice with fries next!

I'm so sorry to hear about the sinus infection - that can be very uncomfortable - like someone has stuffed cotton wool up inside your face - I hope it ends soon and your cough recedes and allows you to get some sleep. 

Well, I have a rest day today and then just two more treatments on Wednesday and Friday.  Will report back once I'm out the other side!

As always, thank you for your care and concern.
Kindest wishes
Helen xx

Ro10's picture
Ro10
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Joined: Jan 2009

Hope your last two treatments went okay.  Hope the pain and nausea were still tolerable.  Did they give you a certificate for completing the treatments?  I got a certificate, and there was a bell to ring, too.  At the bell they have a plaque that says "Life is not measured by the number  of breaths you take, but by the moments that take your breath away".  I like that saying.  My daughter gave me  a shirt with that saying on it.  

Last week on Red Band Society (a new TV show, about a hospital for sick children) one of the characters said "Luck is not getting what you want, Luck is surviving what you don't want."   That really touched me.  None of us would choose this Cancer journey.  We are lucky to be survivors.  

You remain in my thoughts and prayers.  Hope your cyber knife takes care of your tumor.  Hope you have agood weekend.  In peace and caring.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

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

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Helen:

So happy that you are finally finished!    I am glad that everything went smoothly for you for your last treatment.   It is great hearing good news from you and Ro to start the weekend.   It put a smile on my face!

Have a nice weekend.

My best to you!

Kathy

Ro10's picture
Ro10
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Joined: Jan 2009

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's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

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's picture
HellieC
Posts: 524
Joined: Nov 2010

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

Ro10's picture
Ro10
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Joined: Jan 2009

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.

JS Sister's picture
JS Sister
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Joined: Oct 2014

Ro

I am hoping you have a fantastic drive to Florida. This too is my favorite time of year. 

You are not alone

best wishes, and safe travels. 

Sister

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Thanks for thinking of me, Ro.  I am feeling much better.  The nausea has gone and I am in no pain now, which is wonderful.  Although I think my local pharmacy is missing me - I must have been their best customer for painkillers!  I am still feeling a little tired, but nothing too bad and I am just happy to be through the treatment and out the other side!

I am so pleased your cough is less severe.  As you suggest, the radiation flare has probably gone by now but there have been some nasty coughing bugs in the UK this autumn, which seem to last a long time with some people, so I wonder if you have something like that?  Still, you have your lovely trip to Florida to look forward to, and a milder winter ahead to help you get your strength back, although I am sure the drive will be tiring.  A trip to see the spectacular colours in the fall (probably to New England) is on my "bucket list" as I would love to explore that area and see all the beautiful colours.  Our autumn is a bit slow to start this year as the weather has been very mild, but the trees are turning now and the weather is getting colder (and very wet!).  I love our changing seasons and always hope that we will get a white Christmas (which isn't very often).  

Have a safe trip, Ro.
Kindest wishes
Helen xx

Ro10's picture
Ro10
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Joined: Jan 2009

I love your new picture.  You look beautiful.  I am glad your nausea and pain are gone.   Glad you do not need painkillers now.  I have been fortunate that I have never needed anything stronger than tyelonal for my minor aches and pains.  I hope your energy continues to increase.  In peace and caring.

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