[garyobrienParticipant]

Hi everyone,
Unlike the majority of you guys I don't have myeloma, but my 41 year old sister was diagnosed a little over 7 weeks ago. All of your stories and updates are very moving, I almost feel embarrassed to be here, not suffering from cancer myself.

My desire to join the Under 50's was simply that I want to understand. I want to know what I can do to help my sister be more positive about her life. She overcome a major spine operation (plasmacytoma), they have found further lesions on her spine, neck and shoulder, but strangely, there was no cancer in the bone marrow they extracted from her hip. Multiple plasmacytoma is what they have diagnosed, but there doesn't seem to be a lot of info on it.

She's having her treatment – oral chemo, recent radiotherapy, steroids, thalidamide etc and it's making her very tired. But most of all I'm worried about her outlook. I wish I could put myself in her shoes so I could figure out how to break the spiralling negativity.

It's all so easy to say when it's not happening to you and I feel selfish even hoping that she could be positive. But when I read your stories you all seem so optimistic. No doubt you have your ups and downs but what keeps you going?

My sister knows that she could have many, many happy and relatively healthy years but after 2 months, I think it still feels like a death sentence for her. She was such a happy, social person but, despite being back on her feet, she hasn't left the house in 7 weeks.

I was hoping that there may be other people in the group who have 'been there'. I'm trying to get my sistet to join so she can start to discuss how she feels and get some support.

Any feedback would be appreciated.

Thank you guys

[eveParticipant]

Hi Gary
Welcome to the site,as a carer i and others,have been standing,just were your standing and feeling the same as you,no matter what we say you are going to worry,but welcome to the roller coaster.Do not feel embarrassed,just feel glad you are not alone,and everyone on here knows how you feel.:-)

Please get your sister to join the under fifties,she will find people on there,who know how she feels,and are the same age group,some a lot younger,with kids and the same social problems that come with Myeloma.

The treatment she is having ( chemo) will be effective on the Plasmatoma and lesions may I suggest you look in to old post on here or send a e mail to Ellen who can send you info to read up on,once you learn more about it,you will be able to support your sister,prepare yourself for a big learning curve.The more you have understanding of Cancer the more help you can be to your sister.

This time last year my husband was a very sick man,today we are going over to France to do some Christmas shopping,a year makes a big difference.Eve

[eveParticipant]

Hi Gary
Forgot to mention,have you looked in related conditions,there is a few younger people on there who have gone through the same thing as your sister,
Eve

[haraParticipant]

Hi Gary,

I only just discovered this forum yesterday and your post which is the first I am replying to.

I have been on both sides of this situation. I had two plasmacytomas diagnosed in 2000 (when I was 36) and was treated with surgery, chemo, autologous stem-cell transplant and radiation. Following my treatment, my younger sister was diagnosed with Stage 3 Malignant Melanoma. Sadly, she died two years later.

Before my sister's diagnosis, I had always suspected that in some ways it can be harder for the relatives of the patient, than the patients themselves. And this was confirmed after her diagnosis. You want to be there to support but feel helpless. You want to make it all better but can't and so always feel you need to do more.

You absolutely should not feel embarrassed at all. I think it's lovely that you're getting involved in this forum. We're all part of this whether or not it's us or a loved one who's directed affected, and working together is such a good thing. Having cancer, you feel like you're part of an exclusive club but not in a good way. I think it's very helpful and supportive to have family and friends 'join the club' as it brings us all together in our respective battles.

I know it must be very difficult to see your sister feeling so low. It's of course easy to say 'just give it time' but when you're in it, it just seems so overwhelming. I can tell you that I did suffer and spiraled slowly into depression following my treatment in 2001. At first I just didn't realize it because you just think it's all post-treatment lethargy but eventually I got so bad that I was in a constant state of panic and finally contacted my GP and was put on anti-depressants which worked.

Your sister may or may not be suffering with depression but it's definitely worth talking to her about as it's certainly nothing to be ashamed of and there's lots of help for it. In the initial period when I started the anti-depressants, I was also given Diazepam to take if and when I suffered from panic. I found I rarely needed them but took great comfort in knowing I had them just in case. One of the problems with depression is that people often can't see it when they're in it and just feel like they need to 'pull it together', but sometimes that's just not possible especially with such a life-changing situation as being diagnosed with cancer.

I would recommend talking to her about how she feels and whether she thinks it might help to talk to her GP about the possibility that she's suffering from depression. She may feel that it's too early and just wants to take it slow and see how she feels and I can understand that. It is a slow process of recovery from treatment and things can and do move on. But as long as she knows you're thinking of her mental well-being and that you're there for her to support her in any way she needs, hopefully she won't hesitate to tell you if she feels she needs more help in this way. I'm sure she knows this anyway but it's good for her to hear specifically that you want her to be looked after emotionally as well as physically.

I'm very conscious I've been rambling so I should stop. Just to add that I am recently relapsed and am undergoing further chemo with another autologous stem-cell transplant to follow in the new year. I too don't feel like leaving the house! But I had 10 years of healthy remission and am confident they can do it again. And the drugs they have now are much better than what they had 10 years ago so I see things in a very positive light. I know it's early days for your sister but I hope she can take comfort in all these people, like myself, who continue to live relatively healthy lives with Myeloma.

I wish you all the best.

Kind regards,

Hara

[MinParticipant]

Hi Gary and welcome to our very exclusive club.
i can identify with all you are feeling and how your sister is responding.
Its just a thought but?. I can remember the time my husband was on Thalidomide and all the other drugs to go with it.
If you sister has previously been a well person the quantity of drugs can be overwhelming, and if in the 1st instance she did not feel too ill, the quantities of medication are a pointer of how ill she is. Bringing it home to her that she has the dreaded C.
More importantly she will have read all the literature and been given a pep talk about how she may get an infection and how she must respond quickly to it by seeking assistance from the hospital who are treating her.
My husband was terrified of catching germs and initially became something of a recluse refusing to go out in crowds for fear of getting a cold or flu. Particularly at this time of year.
Perhaps you could suggest a walk in a park or countryside where no crowds and no germs! Then at least she can get some fresh air and excercise.
However must not forget the fact that all of those drugs will be leaving her feeling lousy. But she will respond eventualy and start to feel better but slowly slowly.
Patience is needed here as its it a long slow recovery and support is far more important at the moment.
Just let her know you will be there for her for whatever she needs you for and she will respond eventualy when she is up to it.
Regards
MIn

[PerkymiteParticipant]

Hi Gary & Hara, Welcome (?) to the club. For me the key is talking about it when people want to talk about it and not allowing the "elephant in the room" scenario. I do get a little down some days, not so much depression just that I just do not feel my normal happy self.

I found your post very interesting Hara, 10 years remission well done. It is stories like yours that give us all hope, weren?t they still using leeches 10 years ago ?

Kindest regards ? vasbyte

David

[ChelleMcParticipant]

Hi Gary, First off.. Don't be embarrassed!! It is wonderful that you want to help your sister. I am the carer for my husband who is 37 (DX 2004). I wish I could say the magic words to solve the situation but unfortunately… Cancer sucks.. And there is no easy way. Phil had SCT and different chemos over the past 7yrs (including Thalidomide) and did quite well. This past year MM has been running the show and I have noticed a change in him. We have just been told that Phil's only options are drug trials as there are no more NHS chemos. I would say just reassure her that the Consultants will do everything they can and there are so many different treatments now. Thalidomide is just the tip of the ice-burg. Maybe plan a special day out just the 2 of you. Don't tell her the details just say you need to run out and surprise her. A day not thinking of MM is a good 1, and she just needs to get use to not having it 1st on her mind. That can be tough.. It's the not knowing that can be so tough and with MM there is only not knowing. This forum is very helpful and you can email us anytime. You may want to contact Macmillan as they have "therapists" to help with the depression of all that is going on, support groups or the PEER network run through Myeloma UK are other options. Feel free to contact me if you ever need to chat (or vent). This is a hard road to be on, carers need support as well. Best of luck. Keep us updated..
Chelle xx

[cmayoParticipant]

Hi Chellemc,
It is so good to read about someone whose experiences are similar to mine. Jez, my husband, was diagnosed with Myeloma on our second wedding anniversary, when our eldest was less than a year old. Now we have two and they are five and nine! I had a bad experience on Friday that has left me feeling down. Before Christmas I had a bad morning where I felt tearful and overwhelmed. i don't really know what the trigger was. Anyway, I spoke to my boss, who is a very kind and understanding lady. She suggested i contact a helpline which is free for employees and they offered me counselling. Now I have had counselling before, when jez was about to embark on his second transplant, and found it very helpful. however this time I didn't at all. I didn't think the counsellor I spoke to had any experience of what i was going through and the phone session ended with me feeling completely depressed and generally negative. So I think your suggestion of contacting a specific cancer charity for counselling sounds more appropriate!!

[jmsmythParticipant]

Hi Clare

Sorry to hear that you are feeling down. My husband has MM and when diagnosed I went to pieces. It was organised for me to see a counsellor through Action Cancer. I went and it was a disaster. Although I just met the counsellor, there was nothing between us. I got the impression that she would rather be elsewhere. I never went back. Still was not able to handle things. A friend who worked in the cancer unit got me an appointment with a counsellor through Macmilllan. Robin was fantastic – I was at ease with him and went for months untill I knew I could go it on my own. After 4 years I found that I needed to talk again, Robin had retired and I was put in touch with Declan. Once again he was really nice and he helped me a lot. Sorry Clare for going on – a long way to say that you have to have a connection and trust with the person that you are going to tell your thoughts to. It might take a few appointments till you find one but you will. Try again. It really helped me and it is a comfort to know that if I need them they are there.

I hope that you get someone soon

Love Jean

[cmayoParticipant]

Thanks Jean. Will try Macmillan!

Clare x

[eveParticipant]

hi Everyone
Can some one tell me what has Gary O Brien??????? Eve

[brochoParticipant]

Hi Eve not sure what your question is , Gary has qa sister who has just been diagnosed with mm. love Bridget x

[eveParticipant]

Hi Bridget
Do not understand it myself LOL loosing the plot I think:-P Eve

[garyobrienParticipant]

Hi everyone and thanks to all of you for your responses and positive feedback.
It been a while since I've been back to the site, we've all had our heads down focussing on getting my sister through the first 6 months of treatment.

She's definately been showing some signs of improvement in respect of general outlook and we've even managed to get her out and about a little which can only be a good thing. I hope positive things are happening for you guys too.

I was hoping for a little more advice, guidance and insight on some recent development. I get the best feedback from the members of the site than from anywhere else.

My sister got up yesterday morning feeling fine but by around 11.30 was complaining of headaches and blurred vision. By 2pm she was acting very irrationally, repeating sentences over and over again, switch the TV and Kitchen taps on and off and generally being very fretful.

We all feared the worse but a brain scan and bloods have all come back OK. She is still very confused today and the doctors are a little lost to understand what is happening but they have suggested the possibility of steroid psychosis. Her consultant did extend her steroid treatment recently to end her cycle more gradually. Has anyone every heard of anything like this before?

My second question is around stem cell replacement treatment. When my sister was first diagnosed her consultant mentioned this but said it was 'way down the line' and would be done to give her an extra 12 month or so. Now he has turned round and said they are going to do this soon after her first cycle of treatment finishes. My sister has aksed why he wants to this and he keeps stating the 'give you extra time' line! My sisters read this as meaning she her cancer is more advanced than she hoped, but her consultant has never given any indication to her progress.

We're all very confused and the consultant never seem to explain anything to us properly. I think he's forgot that he is dealing with individual people, not just number on a page and people just going through a process.
In the months since her treatment has started he hasn't once gave her something positive to hold onto, despite her bloods going in the right direction, not further myeloma or lesion development anywhere in her body etc.

My sense is the stem cell (and other high dosage treatment) is more readily given to younger and fitter myeloma sufferers (my sister is 41) as they are better suited to handling it. If this is the case, why the hell can't the consultant just come out and say this instead of just throwing us tit-bits of medical journal speak!! The emotional well-being seems to get forgotten in favour of treating the cancer but I'm a big believer in needing both to go well to aid recovery.

My sister requested a 1-2-1 with the consultant to get some clarity and came away just as confused and with the offer of 'do you want a different consultant, because clearly I'm not communicating with you in a way you would like' ringing in her ears. The man has the sensitivity of brick!

Any advice on any of the treatment issue raised, or how to deal with an unhelpful consultant, would be beneficial and very welcome.

Thank you all

Gary
x

[wendyduffieldParticipant]

Hi Gary

Your sister seems to be going through the mill right now with the treatment. I can relate to the blurred vision and the headaches and the paranoia as I had this when taking the steroids (was also on the CTD regime. The confusion I am not so sure about although I do remember a little bit of a fog which I put down to the thalidomide. I do hope she feels better soon and perhaps if she had a better consultant they could discuss reducing the dose?

Has she or you tried ringing the Myeloma UK nurse to discuss these side effects? I have found them to be very helpful. My other question is has your sister been assigned a specialist nurse at the hospital as they can sometimes be more helpful than the doctors.

With regard to the stem cell transplant, my understanding and experience is that this procedure takes place when the initial cycles of treatment has reduced the abnormal cells to a reasonably low level. If your sister's bone marrow doesnt show any abnormalities then I dont know how the consultant will assess this, maybe through the blood tests which you mention are going in the right direction. It would certainly be unusual to have a SCT after one cycle of treatment and I can see why you are both confused.

I think that you are not going to get anywhere with this consultant so perhaps it would be best to see a different consultant. I dont know what hospital your sister is at but there must be another more sensitive consultant she could see?

Anyway I hope you can work something out.

Regards

Wendy

[Author]

Posts