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Friends and Family Affected by Myeloma

MM and Dark Thoughts

#1

I was diagnosed with MM in 2006 and given 20-30 months.

As you can see I have outlived that prognosis.


During the last 6 years I have undergone 3 courses of chemotherapy and all 3 have had to be suspended because of severe side effects. The first course killed me but they resuscitated me and my leg developed necrosis and was seconds away from amputation. Luckily it was saved but I had to have skin grafts so my lower left leg looks yucky LOL


I'll get to the point of why I am writing this.

For quite awhile now I have been plagued with a lot of dark thoughts about death.


I have been having more bad days than good recently and I am getting panic attacks.


I'm also very tired all the time.


I was woncdering if there is anybody who could tell me how a typical MM sufferer dies.


I did ask my oncology nurse and all she could tell me was she thought we just got tireder and tireder and one day would not wake up.

Thank you for reading. I have kept it short and sweet. I could have written a book but I don't want to bore anyone HA!

Leslie XXX

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#2

You aren’t boring anyone. We are here for you. Keep fighting!

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#3

Dear Leslie.

I read your note and want to encourage you NOT to give up. Keep fighting and look how you have already surpassed their sad prognossis. Take joy in that!

I am a 74 year old female and was diagnosed with MM in July 2012 and my oncologist said: " MM is not curable but it is treatable." I totally trust my doctor. I started with Velcade, Revlamed and Dex. and after 2 weeks developed a horrible reaction. 2 weeks in hospital and 4 weeks in reha. Kidneys and lungs stopped funcioning, I turned RED from head to toe, inflamed inside and out and was terribly swollen and weak.

Just started chemo again. 2 times a week, 2 weeks on and one week off. Just had a 2nd opinion with a fabulous specialist in MM at the University of Pennsylvania Hospital in Philadelphia, a Dr. Branden Weiss within the practice of the BOSS, Dr. Stadmayer. I may have misspelled the names.

Dr. Weiss and his assistant spent 2 1/2 hours with me on my first visit and also had some blood work done.

He feels the Revlamed may have caused my bad reaction where the other doctors felt that it was the Alpurinol that I was taking on a daily basis. We will determine later if I am a candidate for the stem cell procedure and also if I even want to go through that. I was told that I would need to spend at least a month in the hospital and I also would not feel good for about 2 month. That aside, I do not think that the jury is in about the benefit of stem cell replacement for females in my age group. I would like to hear from others who have experienced it and how they are doing...........................

If your own doctors have questions, I would think that the specialists here would be happy to give their opinion.

With email and skype it is so easy to converse, no matter where a person lives. Our world is small thanks to technology.

Do you lead a fairly normal life, able to take care of yourself?

I feel very tired at times with my head in a fog many days. I have taken leave of absence from work but hope to get back to it when chemo is done and I am hopefully in remission. I do take care of myself by myself and now drive alone to my treatments and to the weekly blood test at a local hospital.

Please let us all know how you are doing. When you feel lonely or not well, sit down and write on this site. DO NOT GIVE UP! We're all in this together. I have not met a real live MM patient. I have asked where I get my chemo but I guess the nurses cannot point to someone. I would love to talk to a person going through with what I am going through. Are there other MM patients in your area?

Take good care, make sure you eat something nurishing every day and let the sun shine on you a little every day. That will help with depression. I was VERY depressed last Sunday but thank God it only lasted that day.

I took the phone off the hook and went to sleep. My (adult) daughters panicked as they could not get in touch with me. I had not given that a thought.

Best wishes

Liz in Pennsylvania

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#4

Wonderful comment Liz!

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#5

Leslie, I can relate to how you feel.your getting tired of all the doctors and treatments,its hard when you have more time at a medical facility than most of the people who work their. I know since I have been going to the same one since 1995. But don't give up, you have effected my life and we have never met. When I became ill with mm I went into a tail spin,my world came crashing down.I won't go into details but I found this place, read most everthing I could read including your story. That is when I realized that their are people who are worse than I and they can still smile. Our lives and stories effect people around us in a positive way and we never know or intend for it to happen,but it does.Strength of spirit is found in weakness of the body, we do our best when we are challenged the hardest.Honestly, if I could choose a way to die, falling asleep and not waking does not sound to bad,however I will not hope for death any time soon as I want to enjoy as much of this gift of life as I can.Your story is inspiring and can and should continue,you should be proud of the fact that you have shown strength during adverse conditions. I pray that you find a strenth and that things improve for you

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#6

your positive words are wonderful Rodney. thanks for sharing.

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#7

Keep fighting Lesley! My mum was diagnosed 12 months ago and after having chemo and a stem cell transplant is now in remission. I just wish a cure could be found for all the lovely people out there who are fighting this bad disease.

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#8

Awwww thank you so much for all your kind words of encouragement, I really appreciate it.

I saw my doctor today and hehas increased my MST to 5 x 30mg twice a day. I also have Pregabalin and Co-Codamol 30/500 mg. I find the Co-Codamol useless. I used to have the Distalgesic (Co-Proxamol) but the doctor I was seeing at the timedecided to change me over. There was a big hoo ha over this side of the pond when David Kelly commited suicide during an inquiry about mass destruction in Iraq.

They then put Co-Proxamol on a registered list d'uh!!!

I am feeling a bit chipper today. The last few weeks have been a struggle.


Unfortunately the zometa drip (bone hardening treatment) has affected my teeth, gums and jaw. I have had to have the lower bacj out - I have 7 left in the front. Because I have a very poor immune system to heal myself they have suspended any further chemo treatment whilst my mouth is being treated. I can feel the gum splitting on the left hand side. I still have stitches on the right. Although I felt a thread with my tongue the other night and tried to pull it out. Oops!!! Had to cut it out in the end LOL

I have my next blood tests in January and see the oncologist after for the results. Last time I saw him after my 3rd round of chemo was suspended I saw what my count was. It was high enough to warrant further chemo so I'm hoping it is behaving itself and not galloping HA!

When I had my first round of chemo back in 2006/7 I was fine for the first 3 weeks then I ended up in hospital 3 times in the December 2006 and I didn't get out until April 2007. I died twice, nearly lost my left leg. Intensive Care for weeks. Was transfered to a hospital in England for the maggot treatment *oh yum* and then skin grafts. As I had been lying on my back for 4 months I had to learn how to walk again. I still have to use crutches.

To top all that off my right knee needs replacing but the oncologist has refused to allow me to have it done as my bones won't take the screws etc. He saw me sitting outside the orthopaedic surgery and caried on walking shouting "no kmee replacement" *cackle*

Luckily my husband is doing most of the chores around the house and the shopping plus walking the dog and looking after 3 fish tanks. My mum also comes twice a week to help.

In that respect I am very lucky. However I don't like to keep mentioning how bad I feel or death etc to them. They know how bad I am. I try to stay cheerful.

Thank you for listening

Leslie XXX

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#9

Keep your spirits up Leslie. As hard as your symptoms are to endure right now, life is still worthwhile! None of us with MM are symptom free. As I wrote before, we are all in this together. It feels so good to be part of this community. I'd love to hear from patients who did not have stem cell transplants but had all the chemo therapy available and recommended and find out how they are coping. Is there some normalcy while in remission?

I checked your island out on Google and learned many interesting facts. Being so close to France, do most people grow up also speaking French besides English? Is it taught as a 2nd language?

Here in the States we are getting ready to celebrate Thanksgiving on Thursday. It is one of the loveliest Holidays of the year. Families and friends travel far distances to get together for the "turkey" feast.

Take care and keep us posted.

Liz in Pennsylvania

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#10

Hiya Liz - good to hear from you again.

Yes my dinky little island is very close to France. I came here when I was 8 years old. French was part of the curriculum and I managed to pass both the written and oral exams YAY!!

We have a large Portugese community here. In fact we have a flat we rent out to a Portugese couple. They are so lovely and have made the flat a little palace.

Recently the island has been inundated with Polish immigrants.

I see a lot of people with MM have had stem cell transplants. I have never heard of this treatment before. Is it like a bone marrow transplant. If so, I was ruled out as being unsuitable.




My oncologist depairs of me. I am his most interesting and awkward patient. The way I look at it is it keeps him on his toes HA!

I don't have any normalcy now and have never really had any remission as such.

Unfortunately there are so many physical things I cannot do. We have concrete steps down into our garden and my hubby has banned me from going down them. I can get down but can't get back up without difficulty. Sometimes my brain and legs don't compute and I freeze. I just can't move my legs LOL

I tend to spend most of my days indoors on the computer, reading or watching TV. 95% of the time I have a shower, wash my hair (half of that fell out LOL) and get dressed or put my comfy satin nightie on ooh la la!!!

I hope I'm not coming across as too negative. People that know me are amazed at how I handle the knowledge that I have terminal cancer. The last prognosis was 3 years but I survived last time and I'm sure I will survive again. Havn't used my 9 lives up yet. Plus my work here on earth is not finished. I am on Facebook and I post a load of daft things to cheer people up.

I really appreciate you taking the time to look Jersey up. Most people think Jersey is New Jersey so I have to explain that no it's not and then go into the full explanation LOL

I hope you have a great Thanksgiving. I know that is a big deal in the States. I get the impression that it's more important than Christmas.

I have been to the States. Back in 1976. My gran paid for me to go for my 21st birthday. I went with my mum. We were going to stay with friends in Canada but it was the same orice to fly to JFK as it was to Canada. I said to my mum let's go to New York and then get the Greyhound bus up to Canada. So we spent 3 days in the city. Very eye opening.

You take care yourself and let me knowhow you are diddling.

Luv Leslie XXX



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#11

Hi Leslie

My Mum had MM many years ago and passed away 4 years after diagnosis at age 60. She actually died from hypercalcemia (high level of calcium in the bloodstream) due to the bones being eaten away, not the cancer itself. She was pretty much ok for the last year of her life, apart from periods of fatigue (could be extreme at times, she just took things much easier and napped more often during these times), multiple fractures and most of her right elbow being eaten away, but this was well controlled with adequate analgesia. Mentally her spirits were high and she had no cognitive decline whatsoever. The chemo stopped working, so she just continued to have radiotherapy for a few months until that did not seem to be helping either. She was fine until the week before she died, you would not have even known the end was anywhere near. She went to sleep and was in and out of reduced consciousness for a few days. I think she was sometimes aware I was there and I just kept chatting away about what everyone else was up to. She would come to for a while and then drift off again. During all of this time she seemed to be very peaceful, not in any distress or pain whatsoever. After about one week of this, she gradually drifted further out of consciousness and into a coma, where she died peacefully about 24 hours later. As far as death goes, I guess it was not bad for her, more for the family who were not informed that this was to be likely path the disease would follow. I do not believe they told her either, as she still was making plans for the following year to travel around the country. Perhaps it is better not to know, but as you already stated that you were constantly thinking about it and having panic attacks I decided that maybe it would be helpful to share my story with you.

I am sorry you are going through this yourself, it must be very frightening for you, but I think the worst of it is what you are going through now. It is normal to be afraid when you are faced with your own mortality, as I have discovered since being diagnosed with a brain aneurysm six weeks ago, but I think it's the living and the lead up to death that is the scariest part and that the death itself is probably an unconscious process.

The only thing I would strongly advise is to not stick your head under the sand and pretend it's not happening. Use the time you have wisely to spend with your loved ones and get your affairs in order so that you can relax and enjoy whatever time you have left, long or short. Say the things you want to say to the people you love and care about, don't put it off until "later" because it's a bit uncomfortable. That is the one thing I regret about losing my mother, the opportunity to tell her how much she meant to me even though I'm sure she knew it anyway, as every time I tried to talk to her like this she would say to stop being so silly and that she would be fine. I wish you all the best in your journey and my thoughts are with you and your family.

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#12

Leslie,I hope all is well and you have a great day.Your story tears at the threads fo my heart, my word life has been a challenge for you.I hold you up in my prayers and to use a term a friend used for me. I shall stand in the gap for you when you can not. Thank you Kitty Kitty for you post. We are all in this together,mm shows no respect of person and no discretion between people.

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#13

To Rodney and KittyKitty

Thank you so much for your comments.

I am in a better place this morning. I think the upping of my MST has helped. LOL
Do you know what I think happens? Although the pain meds don't kill the pain they deaden the thought processes so you don't care about certain things.

I have always been an easy going type of person. I tend to go with the flow UNLESS there is something I particularly want to do, see etc.

Luckily I did a lot of travelling in my younger days and also lived in foreign countries.

I do have thigs I would like to put on my bucket list but I know travel is out of the question. Well, physically it is but I can dream :)

My days now tend to consist of waking up and psyching myself up to get out of bed and get down the stairs *ouch*....fire up the computer, make a cup of tea and take a bcketload of pills :). The I sit at the computer and do what I have to do and then play and go on Facebook. Then I do another lot of psyching myself up to get back up the stairs usually on hands and knees LOL another lot of *ouch* then have a shower. I have a bench across the bath to sit on. We cannot afford to have a walk in shower. Then it's back down the stairs. Do whatever bits of housework I can. I do have certain jobs and my husband does everything else. Then back on computer.

Once hubby sits down for his lunch I join him in the lounge and then we go for our siestas and get back up and do whatever or watch TV etc. Then it's bedtime again. LOL

I do have days when I get dressed. Other days after my shower I put a rather nice lounge around nightie on. And occassionally I go out in the car with hubby to hospital, doctors etc etc.

I have been told that the cancer may not kill me. My left arm is aleady twisted towards my body and I have arthritis in my knees, ankles etc etc. I also have permanent back ache from another illness.

Am I rambling? I have no idea what I am writing. Just feels good to write it down.

Thank you for listening and understanding. It means a lot.

Leslie XXX

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#14

Oh btw Kitty Kitty

Thank you for sharing your mum's story. I am suffering extreme periods of fatigue these days and my husband can't understand why. Now I can tell him that it is probably MM.

I have a funny story that happened just yesterday. I was snoozing on the sofa when the phone rang. I answered it and it was hubby's neice who checks up on me and pops round. As she was talking I fell asleep and then I started talking a load of waffle *cackle* ... I was aware of talking out loud as I often do that when I am sleeping anyway. I started laughing and promptly fell asleep again. Hubby took phone away.

Neice is due to come around today. She often stays for about 4-5 hours and is one of those who chat and chat and I often drift off LOL

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#15

Hi Leslie.

In reference top your email about not being able to go the steps down (and up) into your garden, I wanted to tell you how we overcame that problem. We had our contractor build a ramp which accomodates the patient with a walker or a light wheelchair. Unless you have many steps in which case a ramp would not work as it would have to be too long, for up to about 3-4 steps, a ramp made out of wood and plywood, should not cost a lot, would help you enjoy your garden. We did it for my husband after his stroke and it worked out very well.

Thanksgiving was wonderful with the family but it came and went. Now all the children everywhere are anxiously awaiting Christmas.

Are you allowed to do mild excersises to stretch your muscles or are your bones too fragile? Also, if you have back pain, have you tried to walk leaning on a walker? Some patients are too vain to use one but it is of great benefit to most. I love the stationary bike and always feel better after doing a few miles. It moves the blood around and loosens stiff muscles. It was part of my escersise while in physical rehab for 4 weeks. I had promissed myself to buy one for our house but have not done it yet. I do find shopping a chore and very tireing.

I am starting chemo next week again, 2 weeks on and one week off. I sure hope it will help for a while after the treatments are done.

Take care, best of luck and keep in touch

Liz in Pennsylvania.

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#16

Leslie,Liz. What a wonderful conversation this is, once again mm meds will not allow me to sleep, so I am up late.Reading your stories impresses upon me the strength of character you exhibite. Leslie, this terrible plauge we carry has done nothing but make your spirit stronger and your awareness of the world around you more clear, Liz your a kind and honest person, truly doing your best to help another person in a way that only you can do.This is really an example of what people are capable of, its a shame that it takes something like mm to bring it out in us. Thank God there are people like you out there, because stories like this and people like you guys help people like me face tomorrow.

Thanks.....

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#17

Hiya Liz......regarding the steps down onto the garden. Sadly there are 13 of them!!!

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#18

13 steps...........................what a bummer!

Liz

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#19

Where are you Leslie? It has been way too long since we heard from you
How are you doing?
If you can please get in touch
Best wishes
Liz in pa

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#20

Hi there, Liz

Good to hear from you, and hope you are keeping well. Please remember that since your previous post, we have had to have a change of platform. Some people, sadly, have found the leap from one to the other difficult. We’re glad you made it over, but please don’t panic and assume that not hearing from the others is necessarily anything more than a case of technical problems.

That said, sometimes these thread revivals are wonderful: your post and this one will be forwarded to the people already on the thread. That’s in theory. From there, it should be forwarded to the email address they registered with in 2012 or before. IF they still have the same email address, and IF their email program doesn’t divert the message (which is coming from a new source because we changed platforms) to spam, and IF they realize that the new address is us, and not advertising, they may even read your message and come back! That’s a lot of IFs though! LOL

It’ll be great to hear from people if they do! Thanks for posting, Liz.

Seenie from Moderator Support

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