[adriwest1Participant]

Hi, having my Hickman Line put in this Tuesday any advise would really be appreciated, just feel no nervous.

thank you

Adrian

[adriwest1Participant]

Hi all, what’s shocking is that you can/do feel helpless in what drugs we can access. From what I understand NICE are priced focused even at the expence of the patient, the only blessing is that we seem to get the best drugs further down the line. From my prospective I want the best treatment and some of the new drugs offer real hope but the time it takes and the approach by NICE means that trails going forward will probably be the way forward for me. I would be very interested as a patient from anybody about how we can apply any pressure and to who? Really what to do something. I know Myeloma do an excellent job but I personally want to do more.

Adrian

 

 

 

[adriwest1Participant]

• Hi Teresa, I was taking it first thing in the morning, as soon as I woke up. Then waited min of one hour before eating anything, there were a few times I felt sick but geneally I found the drug was less toxic than the previous ones I had been on. Had my biopsy yesterday and fully recommend gas and air, had three so far and this was by far the best if you can use this analogy! How did you get on?
• Regards Adrian,

[adriwest1Participant]

<p style=”text-align: left;”>I live on Isle of Wight- diagnosed June 2016, had 8 rounds of VTD then three rounds of  Ixa. Dex and Rev. Have a bone biopsy next Tuesday to see if the treatment has worked.</p>
<p style=”text-align: left;”>I found the side effects much easier on the last treatment but as you said back on the drugs and daily injections. I think we all hate them!</p>
<p style=”text-align: left;”>Dr J is one of the best in the country so you couldn’t be in better hands.</p>
<p style=”text-align: left;”>keep going</p>
<p style=”text-align: left;”>adrian</p>

[adriwest1Participant]

Hi Teresa, I to am being treated at Southampton, your husbands story and mine are similar. I have just completed three months of the drugs you are about to start. I assume you see Dr J

adrian

[adriwest1Participant]

Hi Richard, you are not rambling this is fantastic feedback- I really appreciate it. How are you feeling now?

[adriwest1Participant]

Hi Richard, God that happened all very quickly for you, you made it and home- is there a sense of relief?  Not having mine until August so more time to think, did you try ice for the mouth?  Really pleased you are still positive, what’s your plan for the next few weeks?

wishing you the best

adrian

[adriwest1Participant]

No worries Ann, I hope everything goes well.

adrian

[adriwest1Participant]

Hi Rob, I hope it all goes to plan on Monday and you don’t have any relays- it would be great to keep in contact.

all the best

adrian

 

[adriwest1Participant]

Thanks Rob- really great info on what’s coming up, really glad to hear your ready for the transplant soon. have you had your Hickman line put it yet? Do you have to wait for a bed before you can start?

thanks

regards

Adrian

 

[adriwest1Participant]

Thanks Kate, I guess it’s a case of wait and see, I’m not sure why this hit me- I have been very lucky and managed to work nearly all the days I have been on treatment and wanted to carry on right upto the last point, I’m self employed so it make life a little more challenging with finance.

Thanks again

adrian

[adriwest1Participant]

Richard, thanks for you feedback, I will keep in contact with you,

Adrian

[adriwest1Participant]

Thanks a lot Kevin- best wishes on your next treatment mate.

[adriwest1Participant]

Hi all, please could I have some help- I was told there was more chemo before harvesting, is this correct? Also I was told I could lose my hair at this point? I know I will lose it but didn’t expect it at this stage- please could I have any thoughts on this- kind regards Adrian.

[adriwest1Participant]

Hi Richard, so happy to see you are making good progress with this marathon of treatment (I still find the whole thing a bit crazy) you are now ahead of me on the treatment as I had two extra treatments (8months in total). Due harvesting soon and was looking for any feedback/tips please- not good with needles etc..

Not sure about the mini allo but I did speak to Scott (member on here) who had this procedure done over three years ago and sailed though it, it weird for us as we seem to have to make decisions about what treatment to take as if we are the experts.

Regards

adrian
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