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Wishing everyone the best and updating on MDM specialist meeting! Wishing everyone the best and updating on MDM specialist meeting!

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  #1  
Unread 06-18-2003, 12:14 AM
Wishing everyone the best and updating on MDM specialist meeting!

Hi everyone,
I just wanted to let you all know that i am thinking about you all and wishing everyone the best in there treatment. I know that i have not posted much but please know that you are all very much in my thoughts. I think this is a great surportive sight filled with wounderful ladies. (Hugs to all)
A week ago today i had an apointment with my doctor to talk about how the meeting went with the MDM specialists and i must admit it was really really scary. She said that the specialists comfirmed that it is lymphoma of the cervix of which they have only treated one other women in NewZealand with my type of lymphoma. After hearing this i then asked and how did it go ( a question i now wish i had not asked ) She said that this women was treated with chemo but the chemo did not work and she died (after hearing this i felt like my hole world was about to colasp around me and it was not going to be worth even trying to fight it )but you are ten years young and it does not mean that it want work for you .. I then said to my doctor " how come you can't just cut it out and she said " the mass is conected to the vains and vesells that pump blood to my body and if they attempted to cut it out i would bleed to death, the only way of treating it is is try to stop it from spreading to other places and to also try and shink it ( after hearing this i feel like a walking time bomb about to exploid at any time) My doctor then went on to say that the group of specialist all agreed that they needed to perform another biopsy of the mass and to also do a full pelvic examination both under anaesthic. ( this will be done on friday the 27th of june) then on the 4th of july she has booked me to to have my first visit with the oncology doctor to talk about and plan my Chemo treatment and i am also booked in at the same hospital to have a CT scan... ( I sure hope that the CT scan is painless and done really quick as i dont like confined places) At the moment i am glad that things are finanly moving along and that treatment is finaly in sight as i am really reall tired of hemaridging all the time and having to talk at least 4 changes of cloths with me where ever i go but i feel really really scared of the treatment that is commming up. I think that this due to having
a lot of dreams of me bleeding to death .... Does any one know of any way to stop these dreams from reacuring?
I want to end this update by once again saying a big thanking to everyone for your surport and but also wishing everyone once again all the best on you walk done this road.
Hugs Bunny_Rabbit
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  #2  
Unread 06-18-2003, 06:15 AM
Wishing everyone the best and updating on MDM specialist meeting!

Hi Bunny

Hugs and kisses to you... You really have alot on your plate right now. One thing I know for sure is that the cat scan is fast and totally painless. You have to fast for 6 hours before the test, drink some, yucky but doable, stuff, two hours before the test, and then just lie on your back. The machine moves over you.

The initial diagnosis is always the worst and I think that we can all agree on that. Once treatment starts and you begin getting good results, some of the anxiety begins to lessen. I certainly hope that that is your case also so that you can also sleep easier. Rest is very important is healing and recooperating.

Take care of yourself.

Rosalie
  #3  
Unread 06-18-2003, 06:21 AM
I am so sorry

Huge 's

I am sorry that you are having to go thru this. As far as the dreams go try to think of a place that you would like to be just before you go to sleep. (like a tropical island) That usually works for me.

I do wish you the best on your tests and treatments.

God Bless & Take care
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  #4  
Unread 06-18-2003, 08:08 AM
Wishing everyone the best and updating on MDM specialist meeting!

Hi, Bunny Rabbit. Thanks for posting and bringing us all up to speed. You know, as I was reading your note, I was thinking, "Well, o.k., Bunny might be the only one in NZ who's being treated for this now, but what about in other parts of the world?" We all know how much smaller and closer the world is today with the web. We at Hyster Sisters are a perfect example of this!

I'd be asking my Dr's if they're in contact with other hospitals world wide to discuss ways of treating this form of cancer. Have they contacted the anyone at the Mayo Clinic? What about Sloan Kettering in NY? Cancer Treatment Centers of America? And I don't even know about Europe and Australia! There are world-renowned cancer centers out there and I've got to believe there will be someone who will look at your pathology and perhaps have other treatment suggestions for your Drs. If it's got a name, someone else has had it, done it, seen it, been there.

I met a lady at chemo the other day who's been fighting ovarian cancer for 10+ years now. What an inspiration she was! And do you now what she told me? That I've got to be my own patient advocate! No matter how much I love and trust my drs and think they're wonderful, I still have to assume some responsibility for my recovery.

Good luck, Bunny Rabbit, and God bless. Keep in touch. This ain't easy to do alone.
  #5  
Unread 06-18-2003, 09:14 AM
Wishing everyone the best and updating on MDM specialist meeting!

Hi Bunny Rabbit,

I am sorry you haver to go thru all this and for your bad dreams. I will pary for you. I hope once treatment starts you will soon see positive results. Keep in touch
  #6  
Unread 06-18-2003, 09:25 AM
Wishing everyone the best and updating on MDM specialist meeting!

Dear Bunny,

During my last CT Scan, when I did start to stress a bit, (because I opened my eyes to answer a question that a technician had just asked), I called out for the doctor and when he came in grabbed his hand, and held it tight until the scan was over. That really helped me, having another human touch.

And I always remember something a bit old-fashioned about preventing bad dreams. But, I know that it's hard to do when one has such a diagnosis. But, if possible, before you go to sleep, take your mind off what is coming, and read a funny book or watch a comedy. Try and not go to sleep with the cares of the world on your mind. Say a prayer or do what I try to do the last thing which is to think of 5 things that I was grateful for that day - that's a prayer as well, I think.
  #7  
Unread 06-18-2003, 09:38 AM
Wishing everyone the best and updating on MDM specialist meeting!

Bunny:

I found a few references in Medscape to cervical lymphoma -- as Maureenie says, it's a much closer world, information-wise, these days!

They all point to embolization as a possibility -- this would be a radiology technique where small coils could be placed into the blood vessels that the cancer has created, cutting off the cancer's blood supply. The papers about this are in Finnish and French, but it's worth your doctors looking into, along with the best "interventional radiologists" they can find!

As far as the CT goes, they'll probably use two different types of contrast, one that you drink and an IV as well. Start to finish, it could take from 10 minutes to half an hour, depending upon the equipment. The newer equipment is quite open, just a "doughnut" around the part of the body being scanned. You might ask if you could bring headphones...that's what my 11 yo stepson uses for his annual C-Ts and he finds them very useful to help him relax. I fell asleep during my last MRI !

I hope it all goes well, and I'm assuming that your doctors are doing all the research they can to get you the care that you need. The studies I refer to were found on Medline, which is the National Institute of Health database of most medical research around the world. Hope this helps, and know that you'll be in my thoughts and ers!



Audrey
  #8  
Unread 06-18-2003, 01:14 PM
Wishing everyone the best and updating on MDM specialist meeting!

Dear Bunny,

Your note really touched my heart. I can't even imagine how scared you must be right now. Keep your faith strong and keep coming here; I really do believe that this board's support is an important part of my treatment.

My mom has a friend who has a complicated tumor that is not able to be removed due to the complexities of its blood vessels, etc. She was told that chemo wouldn't work, so she is doing other things. Though her CA125 hovers around 150, she apparently leads a full life *with* the tumor. She's doing some alternative things through a doctor (I can PM you the link if you're interested). I've read her story, but don't know much beyond that.

One thing I know is that everyone is different. Exhaust all the traditional medical treatments that you can, then look at other options if you need to. Though I have my crying days, I cannot give in to despair, or I will not be able to fight the good fight. So keep your spirits up and know that we are thinking about you.

I am daily amazed at the women on this board who read posts like yours, then instantly start researching -- like Audrey, who came up with alternative ideas that your doctors might not be aware of. Don't be afraid to push and pester your doctors. From everything I've read, the most extraordinary patients are the most vocal, and the most proactive in terms of working on their own recovery.

We will keep you in our prayers! s!
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