[CarolsymonsParticipant]

Hi Jackie. You are a myeloma WARRIOR! It is people like you who give us newbies hope….18 years…most of us can only dream of a lifespan like that…you are one fortunate lady.

Carol

[CarolsymonsParticipant]

I am also dealing with this temperature malarkey. Went to A&E last Sunday with temp of 38 as instructed by haemotology nurse……blood tests, urine, chest X-ray, 1 bag of saline, 1 bag of antibiotics, neutrophils 3.4 so sent home. Monday at haemotolgy day ward for bisphosphonates temperature again 38 (neutrophils 2.9) as it is again tonight, even though I have been on augmentin since Turesday….so frustrating. There is no point in going to A & E…last Sunday they told me how well I looked! So it's paracetamol and another augmentin at 10 pm. I don't understand why they don't seem able to locate the source of the infection after so many tests. Husband (from Bosnia) tells me I have a temperature from sitting in a draft but as an Aussie I don't believe that story! Only worry is that if I stil have a temperature come Tuesday they probably won't restart the CTD regime and I so want to demolish those last 5 paraprotein gremlins.

Carol

[CarolsymonsParticipant]

Peter
I am at the local hospital here in Ealing west London with a visiting consultant Dr Richard Cazmarski. My husband is here in London but all the rest of my family are in Australia. I wish I could say my husband was supportive, but as I have always been the strong one and the breadwinner in the relationship, I think it is difficult for him to cope with my sudden demise. Especially days like today when I am a blubbering wreck!

Carol

[CarolsymonsParticipant]

Any are you on CTD and if so does the 28 cycle include 7 days off drugs? Just curious as they have me on a continuous 3 week cycle with no break, which is pretty gruelling I think. Just wondering if others on CTD have 3 weeks on 1 week off or ongoing like me.

Carol

[CarolsymonsParticipant]

Even though the registrars at Ealing London always seem to be so busy, they do take the time to listen to my reporting of side effects and answer questions, of which I always have many. It is all so confusing and it seems no-one can really give you the answer to prognosis, which is the main thing I want to know. I was shocked to be re-admitted to hospital for 4 days last week after only 6 weeks of CTD (cyclophosphamide, dexamethasone, thalidomide) as I had kidded myself that having always had a strong immune system before myeloma, somehow I was immune from infections, but had a double whammy both lung and kidney.

I agree with purchasing a blood pressure monitor as before being prescribed the tapering dose of steroids I developed braccychardia with my pulse dropping to 45….very scary. The Internet does list this as a less common withdrawal side effect . The myeloma nurse told me I should have gone straight to A and E…easier said than done when you are home alone. I told her that i am sure it would have risen to a normal rate anyway with anxiety, if i had to call an ambulance for the first time in my life. Also she gave me a thermometer at first drug collection day. Visiting the hospital for warfarin (to prevent blood clots from myeloma and thalidomide) monitoring twice a week as well as 51/2 weeks of self adminstered anti coagulant injections in my stomach have both been a trial.

Forgive the long post but steroids make me ramble and today is day 3 as well as chemo sickness day. Listen to me after 7 weeks thinking I know it all, but honestly it is manageable with around 10 of the 21 day drug cycle being better than the other 11…..but from my experience you never really feel normal…..but we have no choice do we? I call my myeloma the cancer gremlins and read somewhere that steroids cause them to suicide, so if that's true then we have to learn to love the steroids!

[CarolsymonsParticipant]

Dex withdrawal day I felt like I had electricity running through my body as well as the terrible pain from head to toe. Ask about having a tapering dose…it definitely helps…lengthens the withdrawal time, but lessens the side effects. The lack of sleep over the 4 days is the worst to cope with though.

Carol

[CarolsymonsParticipant]

Andy I am on warfarin but after 7 weeks my level I still only 1.8 hence the blood clot risk. Back again for testing on Thursday…needs to be between 2 and 3 for protection. I did the injections for 5 1/2 weeks- not very pleasant.

Tom, a research person offered me a place on a trial where you were either given antibiotics or a placebo the whole time you were on CTD, but because I dislike taking any medication I didn't join the trial. I was also worried about asking antibiotics long term as before this diagnosis I always had a strong immune system. After this blip I am thinking maybe I should have joined the trial.

Back on CTD tomorrow so 1 week break. No para protein or lambda light chain levels; apparently after the first 3 weeks they only monitor them 6 weekly at Ealing…….so slowly I am learning to be a patient patient, but it sure isn't easy.

Carol

[CarolsymonsParticipant]

Tom were you given antibiotics all the time or only when you had an infection?

[CarolsymonsParticipant]

Peter I am also newly diagnosed should be week 7 of cyclophosphamide, dexamethasone an thalidomide but just out o hospital with chest and kidney infections so have had a week of cancer drugs while antibiotics do their thing. One important thing I have gleaned from this site is that you should be drinking at least 3 litres of water daily, especially as you had kidney involvement. Also I know everyone is different but I had horrendous withdrawal symptoms from the 4 day 40 mg of dex with pain everywhere and to can cramps so beware! Doc now has me on a tapering dose of 10, 5 then 2 tablets which help

Carol

[CarolsymonsParticipant]

Hi Bev I understand your feelings. I am also newly diagnosed on week 6 of CTD (cyclophosphamide, dexamethasone, and thalidomide) drugs and have asked occupational therapy about hand rails for shower. I don't have bone problems apart from the healing collarbone tumour but find the drugs have made me shaky and often my legs feel like they don't belong to me. Of the 21 day cycle of drug treatment 10 days are manageable with the other 11 being more difficult with chemo sickness and steroid withdrawal side effects. Everyone is different but the treatment certainly is not a walk in the park. As I have said elsewhere, I have gone from believing I was healthy to hell, in a few short weeks! But there is no choice is there it is take the drugs or ………?

Carol

[CarolsymonsParticipant]

Thank goodness we were all worried about you
Carol

[CarolsymonsParticipant]

I am worried about young Tom. I do hope he is OK. Sounds like that c diff infection is too common with SCT. It is a hospital bug isn't it?

Carol

[CarolsymonsParticipant]

Christine I am also newly diagnosed on week 5 of CDT. How great that you are ready for SCT after 4 cycles of CDT…I hope that happens for me. Like you I am in 2 minds about SCT. As I am 63 I am thinking to go or it rather than wait, but I think if I were younger I may have decided to delay it. Thing is all I want is to be drug free and it seems that having the SCT is the only way to achieve that goal. However first cycle saw no change in my lamda light chain readings so not sure if I am even responding to CDT.

Carol

[CarolsymonsParticipant]

Thanks Dai I know I am impatient; it is just that in life I always aimed for the A* (or high distinctions in Australia) when I handed in assignments and I kind of feel like a failure at this myeloma game already. I know I am being ridiculous, but I am still almost in denial some days I fear.

Carol

[CarolsymonsParticipant]

Thanks Mavis. I have to have another blood test today as creatinine rose last cycle so here's hoping that was only a blip. As it is the light chains that damage the kidneys and mine were unchanged after first 3 weeks of drugs it is an added worry. The doctor put me on a tapering dose of steroids this week which has lessened the side effects of the withdrawal. I reckon of the 21 day cycle I have around 11 OK days and 10 not so good. So hard to take when you are not used to being ill. As for the SCT I really do not know what to do.

Carol

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