[CarolsymonsParticipant]

I completed week 6 of CTD last week and then was hospitalised with chest pains, finally being diagnosed with possible? blood clot in lung and both chest and kidney infections. Now on augmentin and clarthromycin (yuk!).
I am anxious because I have had to stop all cancer drugs….just wondering how long after completing antibiotics will they let me resume CTD? Must be plenty of fellow sufferers with experience of these darn infections.

[tomParticipant]

Hi Carol

Sorry you have had to stop the Drugs, I recall that when I was on CTD in 2009 I suffered more chest infections than soft Mick 🙁 but was only in hospital once with a bad chest and high temp but used copious amounts of Anti B's over my 5 cycles :-/

Hope your soon back on the regime

Love tom Onwards and Upwards xx

[CarolsymonsParticipant]

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

[andygParticipant]

Hi Carol
My initial treatment was CDT and I was in and out of the haematology ward like a yoyo with infections in the first few cycles. I think they even named room 2 after me I was in there that often. I can't recall them stopping my treatment though I didn't have suspected blood clots. The antibiotics are important due to the suppressed immune system and they want to get them in ASAP hence a stay in hospital to infuse them.
Are you on blood thinning treatment? I have to inject myself once everyday! Approximately 670 times to date :-0

Every days a gift

Andy x

[eveParticipant]

Hi Carol

This is what we mean when we say a few blips,don,t know what Aussie,s call it.8-)

Carol they treat what every is most important first,and having blood clots with infections in kidneys and lungs are far more important than chemo,they will put you b ack on it as soon as possible:-)

Slim was off chemo for about 4 weeks when he was in ITU,

Listen to your body,keep away from large gathering,s of people,as you want to get back to Aussie as soon as possible,I hope you have family here to look after you and support you,,look after yourself.Love Eve

[tomParticipant]

Hi Carol
Only got them when I had infection (am on them now) there has been talk of putting MM folk on them all the time but I think that has been blown over ?? I haven't read anymore about it??

Love tom Onwards and upwards xx

[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

[wendyduffieldParticipant]

Hi Carol
I had a lot of infections on my 1.5 cycles of CDT, including urine and chest infections. Clarithromycin is really yuk, ask them to give you something else next time.

Your myeloma isn't probably active at the moment so they can stop treatment until these infections have cleared up. I had to do fragmin injections and didn't get a blood clot.

Hope you get over it all soon and the blood clot turns out not to be one.

Wendy

[tomParticipant]

Hi Carol

I hope your Blip is soon sorted 😀 and please don't think back thinking I should have or shouldn't have, it's not worth the extra energy, we make a decision at the time and at that time it's the correct one. 😎 .

Hope ur soon sorted.
Love Tom onwards and upwards xx

[andygParticipant]

Hi Carol
I agree with Tom. 🙂 It's wasted energy looking back saying maybe I should of done this or that or even going along the why me route too. What past can't be changed we've got to deal with what's here in the present and be hopeful for the future. I was offered a trail at the beginning but turned it down because it meant travelling to another hospital future away. Present hospital is only 10 mins away. I've no regrets about that decision because what's done is done and hadn't even thought about till your post mentioned it.
They are talking about switching me to warfarin, more pills to pop, maybe I'm beginning to look like an old dart board lol.
My PPs are checked at the end of every cycle – every 28 days.

Every day is a gift.
Unwrap it gratefully.

Andy xx

[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

[bandityogaParticipant]

Carol

My husband was on CTD and he didn't have 7 days off. It is a continual cycles until you are in remission.

Maureen

[Author]

Posts