Hi,

Going through the process of a stem cell transplant is quite different for every patient. Some individuals sail through the recovery period feeling a little weak or fatigued, where as other people find the recovery period to be quite slow before their energy returns. However, you are normally only released from hospital following a stem…[Read more]

Hi Fuzz,

How was your appointment with your GP? Did you push for blood results? Your immunity must be low at present for you to have another chest infection, sores on your tongue and kidney infection. Hopefully all of your aches, pains and infections might be nothing serious. But you need to press for further tests to try to determine the…[Read more]

Hi Helen

Your life has certainly been quite eventful over the past few months. I should think you are exhausted after moving house and need the spare time which your retirement offers to recover, relax and spend some more time with your family. Did you enjoy your time at the film festival – it must have been a memorable and completely different…[Read more]

Hi Jeff.

I’m not sure how long the benefits last. Though I know one of mine that was operated on has collapsed a bit more but I’m not sure if that’s a fault of the operation or down to the damage caused initially by the myeloma. I’m Still benefiting from the op as the wife says I’m more upright and the pain in my lower back is less. I still have…[Read more]

Hi James.

I’ve been thinking about when you need to be careful or more careful shall I say with what you eat. It’s when your neutrophils are low that’s is when the biggest danger occurs. I was neutrapenic for over 18 months so I was very careful about what I ate and I still are even though my neuts are reasonable. I try and keep risks to the…[Read more]

Hi Susie.

We’ve just got home from a fab weekend in Athens. Laughs booze more laughing and yes more booze and now as it’s Tuesday DEX.

Your post reminded me about the cramps I used to get when I was on Revlimid. It was always at the end of the cycles I used to get cramps in my legs, sometimes my hands and my stomach. I know it’s annoying but I…[Read more]

Hi Jeff.

Just returned from a weekend in Athens. Went there as we were invited to a wedding and did a bit of site seeing too. That was a bit painful for my back but the pain was treated with copious amounts of alcohol. Anyway what I meant to say is I had kyphoplasty over a year ago T11 & T12 were operated on. It definitely helped me though I’m…[Read more]

Hi Sue

I email the nurses – Ellen or Maggie. Email address for both is askthenurse@myeloma.org.uk. I email as then I have a written response that I can refer back to. They are excellent and reply quite quickly

Jean

Robert the article is in the autumn issue of myeloma maters.
Regards
Tony F

Hi Finn

When I was diagnosed my PP levels were about 45. CTD brought them down to just a “trace” after the 6 cycles.
After my SCT in February 2012 they still read “trace” and hadn’t shifted from that until now.

That’s why I was so surprised that they suddenly disappeared altogether. Surprised but delighted as you can imagine!

All my careful…[Read more]

Hi all, please don’t take green tea, read the recent issue of the myeloma news. It has an article about green tea and turmeric.
Regards
Tony F

Hi everyone.

Sorry I’m a bit late to this thread. Constipation is a pain in the a*** and a constant companion of myeloma treatment unfortunately. I try to preempt my bunged up days by starting my laxatives before I take the drug that cause the problems though I take Docusate daily anyway.

James I’m not sure you should be trying probiotics as I’m…[Read more]

Hi all.

As something of an “expert” of the side effects of Cyclophosamide, after over 2 years on it, all the above can be laid at it’s door. Taste – forget about it nearly everything tastes metallic! Good for weight loss though. Even beer takes some drinking. My sense of smell went. Nausea – mildly for 3 days post Cyclophosamide. Concentration…[Read more]

Evening Susie.

Yeah I had the infusion over 15 mins. For me the flu type side effects of Zometa were quite mild and it took me a little while to put the two together. Probably due to other side effects bothering me more.

I wouldn’t change anything until you’ve been through a few cycles and then I would only change things if something was really…[Read more]

Hi Susie.

The nauseas I had wasn’t too bad I was never sick or anywhere close to it. I used to start taking my metroclopramide the night before my Cyclophosamide. The runs were sometimes a problem for me also and I was switched to Ondansetron which helped. As you are just beginning your treatment I would expect some problems whilst your body get…[Read more]

Hi Majic.

As Maureen says I’ve been through most treatments with not much success. I only had one dose of DTPace with 4 nights in hospital. I only had one cycle as it was deemed not to have worked which was the same as every other treatment I’d tried up till then. Even trying for an Allo SCT wasn’t possible due to no match being found.

The…[Read more]

Hi Maijic 30

Reading your husbands history,he has had thalidomide ,then Velcade then pomilidomyde has had his STem cells harvested,then Polidimide and because he has an agressive Cancer they are recommending he has DT pace,and in between this he has had pneumonia!!!!! Plus he has had compression on his spine,hence radiotherapy.

He has age on…[Read more]

Hi John, exactly the same, it’s not there permanently, it comes and goes, usually at its worst prior to a clinic, I put it down to nerves!
Regards
Tony F

Hi Ian,

Small world :).

Thanks so much for the info,its put a lot of worries that were coming to the fore at rest and I have copied it so I can print off and show to hubbie,i know it will really help him.

I didn’t go to the ward when I was there last just the day unit so I guess it will single room maybe when I go in for the final bit.

it so…[Read more]