This topic contains 15 replies, has 6 voices, and was last updated by 
Emma 11 years, 2 months ago.
Hi
Has anyone had a Pulmonary Embolism from Thalidomide? If so, what treatment did you go onto next wich does not cause this? I have had one and they now want me to sign up for new trials but I am confused. Any help you can give would be great.
Upwards & Onwards as Tom says.
Charlie
Sorry Charlie I cannot help. I had a PE from a DVT in my leg about a year before I was diagnosed but that is no help to you. Have you tried the Myeloma Nurse?
Kindest regards – Vasbyte
David
Hi Charlie My husband has had 3 DVTs first caused by Thalidomide, he was given clexin (think thats the right spelling such a long time ago)injections, he then went onto warfrin, which he has taken through all the trials he has been on apart from the last one which was very new and they did not know how the warfrin would react to the drug so he came off it. But had no problems at all
Best wishes
Sue
Hi Charlie,
It appears Thalidomide has not agreed with my mum either. Just over 1 week into her 1st cycle and she collapsed at home yesterday. Unfortunately she broke her hip in the fall. At hospital her blood pressure has been very low and low oxygen levels in blood, she has pain in her chest and they are now treating her for a suspected blood clot in her lungs. They are linking it to the Thalidomide. All sorts happening at the moment with mum in hospital, not sure how long she will be in or what the plan of action will be regarding the CDT, I'm hoping with blood thinners she can stay on it, she was doing so well until she felt dizzy and collapsed yesterday. Having read what's been happening with yourself it seems quite similar to mum.
I hope they make decisions about your future treatment soon and you get back on the fast track to remission without any more bumps!
Emma.x
Hi Emma
So sorry I have taken so long to reply, been having trouble with the computer.
So sorry to hear about your poor Mum, it must be dreadful for you and her.
It sounds really similar, I just went funny and collapsed. They have taken me off Thalidomide completely, in fact, I am off everything until January but am having a bone marrow biopsy this Thursday to see what is happening.
They sais that they will not put me back on Thalidomide as I am prone to PE's after I had a motorbike accident in 2001. (Mid life crisis). By coincidence, I was dianosed when I was 64.
How is your Mum now? What have they decided? Hope you are both OK.
Love Charlie:-S
Hi Charlie,
I had my only PE following extensive radiotherapy a month or so after being diagnosed with Secondary Bone Cancer – Primary Unknown (it took another year and a move from Pembrokeshire to Nottingham before I was properly diagnosed – long story).
My frontline treatment was CDT (Cyclophosphamide/Dexamethasone/Thalidomide) – so although I had a PE history, they didn't hesitate to give me Thalidomide. I have had 2 DVT's (Left & Right Legs) since then but no further PE's and I am on permanent Clexane (blood thinner).
It seems that I am about to start on Bendamustine in the near future, with daily Thalidomide and weekly Dex. I will raise the question of Thalidomide/PE but they are usually on the ball at Nottingham and they haven't indicated any possible problems (the only question about compatibility raised was Thalidomide & PN (Peripheral Neuropathy) but even that was covered by the possibility of dosage reduction if the problem occurred).
You say you have had a PE. What treatment (if any) were you on at the time?
Regards
Dai.
Hi Charlie,
what a time mum's having but she'll get through it. They've decided she needs to wait at least 4 months for the blood clots to go before any surgery. The surgeon is happy with that and says mum can get up and try to
Mobilise in the meantime. She'll be in hospital for that length of time but as long as she has something to work towards (mobility) she'll manage it. I'm just so glad she's not going to be stuck in bed. She's staying on the chemo and having tinzaparin injections. Her pain is being managed well so far.
She's become very assertive all of a sudden especially now she has to rely on others to help her. She's fiercely independent which I think will be a good thing as she'll be determined to crack on with physio. They got her up and into a chair today and she was happy she did that.
I hope Thursday goes well for you and not too uncomfortable. I hope you get some answers and they get you back on a chemo regime that doesn't cause you anymore hassle/worries. Here's to a peaceful Xmas for you and your family. Myeloma is not invited!
Emma. Xx
Dear Emma
Good to hear your mum is not confined to bed, that wouldn't be easy to endure. I hope you don't have too far to travel to visit her and that the weather stays kind to you. Love Helen
Hi Dai
I have been trying to reply to you but this new computer is so confusing.
I was fine until they put the Thalidomide up from 100 to 150. I took this for two days and then collapsed one morning – rushed to the hospital, collapsed again, resucitated, then kept in hospital. Taken off Thalidomide, which they said caused it and my doctor in St Mary's – on the Island said that Thalidomide should not be more than 50mg. I have had a history of PE after a motorbike accident and an operation on my leg. I had a PE twice after that in 2001.
My doctor in Southampton where I am on the trials says I may go on Thalidomide again as my course is randomly picked. I am dreading that, if this causes PE's. At the time I was on CTD. At the moment, I am on absolutely nothing which is wonderful. I have had a bone marrow biopsy last Thursday and on 3rd January I shall have my next randomisation depending on the bone marrow results.
There is not a point in the treatment if the PE kills you first. I am glad, at the moment to be alive.
Dai – hope you are OK – this is all so confusing isn't it.
Love Charlie >:-(
Hi Charlie,
How are things going with you? Have they decided what treatment you will
be having? I hope you were able to have a peaceful Xmas and new year.
Emma.x
Hi Emma
I had my consultation yesterday to decide on the next course. They have given me three options. To come off the trials and go on Velcade at my local hospital. To go back on Thalidomide at a lower dose as that was bringing my para proteins down for a couple of cycles or Velcade twice a week in Southampton or I could be randomised straight to stem cell.
We have asked for time tho think about and discuss these options as I do not want to risk another PE with the Thalidomide.
How is your Mum now?
Love charlie:-0
Hi Charlie,
Mum's doing ok thanks. The dr's and physio's are happy with her progress, a little too happy as they seem to be trying to get her out of hospital! She's in no way ready to go home yet, she still has low blood pressure, blood clots and a broken hip! So it might be that she gets moved to a community hospital for rehab in the meantime until she has her op. I hope they don't send her home as she's lost her confidence and would need someone there 24/7 which just isn't possible. Anyway she's on tinzaparin injections for the foreseeable future, these won't prevent blood clots but will stop them travelling to the lungs again.
Has your dr said anything about you having similar injections or warfarin to help stop/prevent another PE? I'm not sure how much thalidomide my mum is on she takes 2 tablets at night and 50mg seems to ring a bell. You have a few options to consider, it's tough knowing what was working was also having very serious side effects. I'm glad mum in in hospital where they can keep a close eye on her now I know how quickly the blood clots can develop and she had no idea until she collapsed.
Best wishes in whatever you decide I really hope you can get some peace of mind from your doctors as now they know you are vulnerable to PE they can keep a closer eye on you.
Emma. Xx
Hi Emma
I have been on Clexane injections from the beginning because I had previously had PE's. They have now upped the dose.
Don't fancy going back on thalidomide. We are still thinking about our options. It is all so difficult.
It is good that your Mum is in hospital as it takes so much worry away knowing they are looking after her.
Here is to a good year!!!!>:-(
Love Charlie
Hi Charlie,
How is 2013 so far? I see from your other post you're back on your drugs. What did you decide on? Mum is now starting her 4th cycle of CDT, she's still in hospital, having good days and bad, feeling pretty rough but half way through now. Like you we're hoping for a good result at the end of the treatment so we know the hard times have been worth it. I'm glad she's been in hospital for the majority of her treatment so far as she's been quite weary. She's now Neutropenic so she's in a side room to hopefully keep away from infections!
Do you get any info about your PE? We know mum
Has blood clots and they're just having to go naturally but we have no idea how they can tell if they've gone/going. Her blood pressure is still very low too.
I'm glad you're back on treatment and hopefully this time it will be less eventful.
Emma. X
Hi Emma
2013 is Ok at the moment – fingers crossed. Went to the hospital last Tuesday and was given another cycle of CDT but with extra Clexane injections. They are going to see in 3 weeks my para protein levels and consider Stem Cell Transplant.
Is your Mum OK now? Somehow it is less worrying when she is in hospital, you know there is someone looking after her all the time. I know my wife keeps an eye on me all the time in case I collapse again. They said that I had 2 small clots but they thing it was a large one which was broken up during resuscitation. Thank Goodness.
Upwards and Onwards. Hope your Mum does well. Wouldn't remission be wonderful?
Love Charlie :-S
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