[mandyphillips41Participant]

Hi. I was diagnosed with MM in October 2012 and I have recently finished my 5th cycle of treatment (I am on the clinical trials) I feel like I have had a real rough journey from Day 1 and cant help but wonder if this is because I am on the trials and maybe I should have opted for the basic treatment so as the side effects were less.

I have had four Stays in the hospital with one thing or another – low calcium, pneumonia, pleurisy etc. During my last stay in the hospital I was put on oxygen as I was having panic attacks. This continued when i came home and the doctor prescribed me with Propranolol. The attacks seemed to go away but just the last 2 weeks I have had quite a few of them. Does anyone else experience Anxiety/Panic?

The side effects of the medication are dreadful, I now have a very swollen right foot and leg, my GP doesn't know why or what has caused this but I am seeing my oncology specialist tomorrow so I am going to mention it to him.
I am going into the hospital on Monday to have a Kyphoplasty (Keyhole where cement is inserted into my spine to mend my 4 broken vertebras.) My family seem to think that perhaps I am getting anxious with this forthcoming operation.

I have had my stem cells removed and I am awaiting a bed at the local hospital for my transplant this should be within the next 4 – 6 weeks.

I am always tired and I am suffering sweats and then the shivers. Sometimes I talk gibberish and very often I have out of body experiences, I have also been going dizzy and confused.

My husband and daughter have been amazing and they are so patient with me even though I constantly have something the matter with me.

As you can see the list of side effects is immense (I haven't even listed them all)and I am fed up more of hearing myself moan about this or that than anything else – has anybody else experienced multiple side effects.

On the whole I am normally a very strong person and I struggle to find that I am not in control – maybe this is another factor with the anxiety.

Mandy x

[eveParticipant]

Hi Mandy

Welcome,,everyone on here will tell yo the Myelma journey is like a rollecoaster ride,mentally and physically ,everyone is different,plus add the equation of carers ,you get a real mixed bag!!!!,so every thing yu are feeling is normal.

It sounds if you are doing well,had a few blips,but on track,to help your back!!! Plus SCT,it would be nice to sail through all this and lots of people do, you just have not had an easy trip,but give yourself some credit!!! You have got this far !!!

Any help to you,I moan and I am the carer,as for not being on trials,I would have to disagree,?? I take it you had either CDT or CRT.????. MX1. If you were not on trials first line treatment is CDT!!!

Good luck with you op,also SCT,let us know how you get on.Eve

[VickiParticipant]

Hi Mandy

Colin had his SCT in November 2011. Like you he had a really rough ride during his induction treatment. He was in and out of hospital with infections and temperatures, virtually every month for 7 months. Antibitoics etc etc. It was a really long haul. However that said the trial was worth it and he got to SCT and remission!. He also had anxiety attacks, terribly in particular before SCT. He couldnt breath, very emotional etc.Lots of tears- but i think part of it quite rightly was fear, some I expect tiredness as a result of getting to that point and the constant struggle to believe you can do it. It is hard to watch a loved one go through it but you are like anyone else- struggling to come to terms and battling though. You can do it. I dont know whether its good to be on trials or not- we picked that route so it must be so, Given the volume and strength of medication you are bound to be ill- on or off trial. You can be forgiven for being out of control!. You have a damn good reason- go for it- you have come this far 🙂

Vicki and Colin x

[MothasParticipant]

Mandy can only agree with the others. You've already shown immense strength and fortitude to get as far as you have done. Most people in their lives never have to face the kinds of things that we as MM patients do.

Hang in there

all my best

tom

[janwParticipant]

Hi Mandy

It is totally understandable you are feeling anxious with panic attacks.
You have been through a lot of complications as a result of your myeloma treatment and you are now facing more major treatment with your SCT and Kyphoplasty. It is such a shock when you are diagnosed with myeloma, but it is also emotionally hard to go through so many changes to your body, your life, the lives of your family and no doubt your future dreams.

I suffered from bad side effects after 4 cycles of CTD, with the sweats/ shivers which you mention as well as the confusion, fatigue, bone pain and infections. I lost three stone in weight due to constant nausea. I felt absolutely exhausted sleeping 18 hours a day. After the end of the cycles of treatment, I was then worrying about the unknown of the SCT and how I would cope with the procedure.

You also tend to forget how your cancer affects other members of your family. My one son's first year of A levels went badly. My other son bottled up his emotions at university and my husband suffered with stress a year after my treatment resulting in time off work. He was referred by the NHS for relaxation and therapy which helped him considerably. Perhaps you could ask for some counselling help and advice to learn different ways of tackling the anxiety which could help you now and in the future?

I hope all goes well with your treatment over the next few weeks.

Jan x

[mandyphillips41Participant]

Thanks so much everyone for the understanding and encouragement Not had a very good week with sickness and anxiety but maybe it's because I go for my operation on Monday to repair my Vertibraes at least once that is done the pain will hopefully subside leaving me stronger for the SCT. Thanks again, it's amazing to know other people care and it does leave me feeling reassured. Mandy x

[VickiParticipant]

Good luck with your operation Mandy….think nice thoughts. You have the support and thoughts of your friends and family….and we cyber friends. It's a long haul but be stubborn…..Mandy 1 myeloma 0 …..:-)

Vicki and Colin xxx

[mandyphillips41Participant]

Hi everyone, hope you are all feeling ok at the moment. Well I had my operation last week and I must say it was a great success, I have no pain from the fractured vertebras at all.
But, would you believe I now have pain from muscle spasms, the hospital have given me some diazepam to help relax my muscles, they also increased my oxycodone to 110 mgs twice a day and also put me back on the gabapentin. However I now have a date for my stem cell transplant and it is Monday 20th May so only 11 days to go. I am feeling excited and scared at the same time. I think my biggest fear is losing my hair.. I am not a vain person (well I didnt think I was) but the more I think of this the more stressed I am getting. I have a wig ready and some scarves and bandanas!!
How did everyone else feel/cope with this? I cant imagine it is an easy thing to get on with and I suppose that I have been lucky so far that I havent already lost it.
Anyway onwards and upwards at least I have my date now so I can get on with it, the sooner its done the sooner I can recover.
I will keep you all posted, thanks so much for the previous encouragement it really did hep me

Mandy x

[tomParticipant]

Hi Mandy

Sorry for the late Poste re your first 🙁 I must have somehow missed it :-S

But I am pleased the Op went well, I understand the Kyphoplasty is pretty good and am pleased it works for you.

As for the hair loss well am a mere Male Mandy and nearly 58 so it didn't bother me in 2009, am sure you will look beautiful when you lose your hair.

Good Luck for your SCT

Love Tom Onwards and Upwards xx

[mandyphillips41Participant]

Thank you Tom.. I love this site, everyone is so positive and supportive:-) [i][/i][b][/b]

[mandyphillips41Participant]

Hi everyone, well I am on day 4 of my 28 day stay in the royal hospital In Liverpool – so far so good. I have had the intensive chemo on Tuesday and yesterday I had some of my stem cells put back in. I will be having the remaining put in today. I am still very swollen – face, ankles & feet. The doctor is prescribing me with an injection today which he says will reduce the swelling.
All in all things seem to be going well and I am on the 10th floor of the hospital so the view over Liverpool is really good.
So after the rest of the transplant today it's basically a case of waiting to lose my hair and start to feel poorly but I am feeling very positive and very strong – I just hope I stay like this
Hope everyone else is doing well.

Mandy x

[eveParticipant]

Hi Mandy

Nice to hear from you also good that you are being positive.

I originate from Liverpool,I remember the Royal is it the same old hospital,???? It was a good hospital 40 years ago, I had a baby in the Royal,we had a saying . Book your bed and then get pregnant..?

Make the most of your freedom why the still allow you out of the room,it will be awhile before everything kicks in,handy to have Internet connection,to keep in touch with loved ones and friends,including your new cyber friends.
Have you had your hair cut in advance,do not want to go plugging up Liverpool. Drains.

Why not keep us up to date on here as people who are approaching this might help them.

Keep in touch.Eve

[mandyphillips41Participant]

Hi Eve

Yes I have had my hair cut into a short bob I wasn't brave enough to go any shorter just in case a miracle happens and I don't lose it – ha wishful thinking. I am already stuck in my room not allowed out for at least 2 weeks.
Yes it's still the old hospital but the new one Is in the process of being built as we speak and it will be located just behind this one.
I will keep posting through my progress for people behind where I am up to.
I am very positive at the moment but I am sure that anyone suffering this will know good & bad days go hand in hand
Best wishes to everyone!
Mandy x

Sent from my iPhone

On 23 May 2013, at 09:03 AM, <noreply@myeloma.org.uk> wrote:

Dear mandyphillips41

eve has posted to a discussion you're monitoring:

Subject:
RE: STEM CELL TRANSPLANT

Message:
Hi Mandy

Nice to hear from you also good that you are being positive.

I originate from Liverpool,I remember the Royal is it the same old hospital,???? It was a good hospital 40 years ago, I had a baby in the Royal,we had a saying . Book your bed and then get pregnant..?

Make the most of your freedom why the still allow you out of the room,it will be awhile before everything kicks in,handy to have Internet connection,to keep in touch with loved ones and friends,including your new cyber friends.
Have you had your hair cut in advance,do not want to go plugging up Liverpool. Drains.

Why not keep us up to date on here as people who are approaching this might help them.

Keep in touch.Eve

Click the link below to view the discussion:
http://www.myeloma.org.uk/patient-services/discussion-board/side-effects/anxiety/#27793

To view eve's profile, click the link below:
http://www.myeloma.org.uk/index.php/profile/326/

Regards
Webteam
Myeloma UK

[tomParticipant]

Hi Mandy

Pleased your Doing good 😀 you ought to take some photo's of Liverpool while you are that High up it would be great to see them 🙂

Stay Well and keep strong.

Love Tom Onwards and Upwards xxx

[meganjaneParticipant]

Hi Mandy,

I am glad to hear you are feeling so positive and strong. Hopefully you have had your second lot of stem cells by now and then it is just a waiting game, watching your blood counts drop and then the happy day when they start to climb again 🙂 My husband Phil was confined to his room for about two weeks when he had his stem cell transplant in December. He was unlucky as his room had no window, just a painting on the wall, but I could honestly tell him each day that he wasn't missing anything as the weather was grey, dull and rainy!

Keep us posted and stay positive.

Megan

[Author]

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