[wendyduffieldParticipant]

Hi Tom

Sorry that you have to start treatment, you will see from all the replies that everyone responds differently to the treatment, has different side effects and the SCT. I had a tough time on treatment which included two cycles of PAD and seemed to be ultra sensitive to everything but I continued to work part time throughout.
My employer was quite flexible and I had my own office (important as you are immuno supressed on treatment) so I guess it depends on what you do, how you feel and whether there is that flexibility with your hours. PAD treatment involves numerous and lengthy visits to the day unit during the first 8 days of the cycle so that is also disruptive apart from any side effects you experience.

However I recovered fairly quickly after my SCT and was back at work after two months (and working at home prior to that).

Hope you dont get too many side effects and my advice is take it one step at a time.

Wendy

[wendyduffieldParticipant]

Hi Jo

sorry to hear about your relapse, that must be hard to deal with, but it sounds like your medical team are on it pretty quickly because of the kidney damage. Hope the treatment does the job and take care

Wendy x

[wendyduffieldParticipant]

Hi Kerry

I cant imagine what Melvin is going through and how distressing and depressing it must be for both of you. I found it difficult enough to deal with the diagnosis of cancer and side effects of the treatment and fortunately did not have any problems with bones caused by myeloma. I really hope that the treatment will continue to reduce his paraproteins so the disease is not so active and that will give the possibility of surgery to alleviate the pain and spinal compression. It really is a day or not even a day but an hour at a time for you two at the moment isnt it? Let us know what they say on Tuesday when you get the results of the scans.

Wendy x

[wendyduffieldParticipant]

Hi Debbie

sorry to hear about your Dad but you will find a warm welcome here on the forum. Has your Dad actually started CTD yet. I was initially on CTD and was never told to stop driving or report to the DVLA but I found it difficult to drive because I was quite shakey and weak on the treatment and did not want to pass out whilst driving! Another side effect of the treatment is fatigue. I didnt stop driving altogether but it will depend on how your Dad feels.

I would suggest trying to fit in a holiday before treatment if possible as when on treatment holidays really need to be cleared with the consultant and are probably a bit of a no no for the first couple of cycles other than a short UK break.

I cant really think of anything much else you should be doing before treatment starts, maybe making sure your Dad as a supply of plenty of meals in the freezer!

Wendy

[wendyduffieldParticipant]

Hi Helen

its good to hear your immune system is doing its job in fighting the whooping cough, hope you get over it soon so you can return to enjoying your remission (whoop whoop!!). I am doing fine and touch wood no coughs or colds for a good while now, had a great holiday playing tennis in Corfu a few weeks ago and did the patient experience talk at Manchester Myeloma Info day which was good fun.

Love Wendy

[wendyduffieldParticipant]

Hi Kerry

When I was diagnosed I wasnt told what stage I was ie 1,2 or 3 and didnt know enough about Myeloma at that point to ask. When I found out more about staging I decided I didnt want to know (but worked out I was probably stage 2/stage 3) because it would have only upset me, it makes no difference to the treatment or the outcome as Mavis says. I dont think Melvin's consultant is keeping anything from you but maybe as Melvin didnt ask the question, he didnt give a detailed answer.

I hope the treatment starts working and things start to improve in the next couple of weeks.

Wendy

[wendyduffieldParticipant]

Hi Helen

I have only just seen this thread, how terrible to get whooping cough but at least it has been diagnosed now, I am glad you are starting to feel better. Re childhood immunisations I received a letter from my hospital to say I should have them all again after 6 months and I had an autograft. Seems different hospitals have different ideas (nothing new there then!

Love Wendy

[wendyduffieldParticipant]

Hi Dai
I am sorry to hear about your recent ordeals and I really hope you get to walk your daughter up the aisle this Saturday at her civil partnership ceremony. Knowing how determined you will be to do this, I am sure you will! I dont really know what to say on the technical side of your treatment but Eva has made some useful comments but I understand your concern about the Revlimid not having a chance to do its job if if you have a gut infection but I suppose the good news is that your numbers have not increased drastically and your infection is now under control. As for the DVT situation, that must be scary and I can relate to your feeling of doom and gloom in relation to your own mortality but like you say you are still here and hopefully will be for quite some time.

Wendy x

[wendyduffieldParticipant]

Dear Rachael, I am so sorry to hear of Paul's death, he was such a regular and positive contributor, this is sad news indeed. Thank you for letting us know
Wendy

[wendyduffieldParticipant]

So sorry to hear the sad news Gill. Im glad that you were able to share one or two moments with him before he slipped away, you were both very brave and now you can start the grieving process. Thank you for your kind words to us, we are all at different stages of our journies.

Wendy

[wendyduffieldParticipant]

Hi Peter
Good to hear you are doing ok on the CTD. I will be at the Manchester Myeloma Info day and am giving a patient experience talk. Look forward to meeting you.
Wendy

[wendyduffieldParticipant]

Hi Helen, I certainly did celebrate over the weekend, I made cocktails and cooked dinner for some friends who had supported me through the process and I had afternoon tea and champagne on Sunday!! Still recovering, no balloons though.

[wendyduffieldParticipant]

thanks all of your for your well wishes and replies. I did hesitate about putting on a good news post because so many of you are going through such difficult times it feels insensitive but I am glad I did because of the positive responses. I think Eve suggested we may have something like they do on myeloma beacom, the US forum, a section for posting what they call survivorship stories. I am not fond of the word survivor but something like a good news/milestones section might be a good idea. I think we all need to celebrate as many of our milestones as we can and appreciate the times when we feel well.

[wendyduffieldParticipant]

thanks all and Helen, a belated anniversary/birthday wishes to your new immune system. Mine is on 1st September!

Did you celebrate?

Now onto holiday planning which I have been doing more of since I found out the good news. I cant seem to find anywhere I want to go to that doesnt have risks from maleria, dengue fever,japanese encephalitis in some cases and other nasty diseases some of which I can be vaccinated against. Given you are prone to being bitten, what made you decide on Peru, is that malaria free?

Wendy

[wendyduffieldParticipant]

well good news, I rang up today to find out my light chain test results and my Kappas have dropped back into normal range, from 22 to 14!! Delighted of course but feeling somewhat embarassed by my over-reaction. There are lessons to be learnt methinks!

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