[helenpageukParticipant]

Hi All,

I am looking for a bit of advice. We have just been told that my mum has got three blood clots…..one of her leg and two in her lungs. It is believed that they are caused by the Revlamid. The doctors have taken her off all meds except the anti inflamatories. She has been told that she has to inject herself with 80mg of clexane per day. Has anyone else experienced clots? If so, how long to they take to disolve? I am so worried about them moving to her vital organs. Any advice and reassurance would be so gratefully recieved.
Thanks. Helen

[eveParticipant]

Hi Helen
It does seem worrying at first,but as soon as you mum starts the injections she will improve.
Slim had a mass of blood clots in lungs,no one realised as he did not get out of breath,plus holes from damage with pneumonia.He has been injecting himself for over 6 months now and we expect this to continue for some time.

If you put a word like blood clots in the box for finding related issues it will turn up post related to word,you might find this helpful,Love Eve

[helenpageukParticipant]

Thank you Eve and I am sorry to hear that Slim has suffered from clots as well. Do you mind if I ask if the cause was Revlimid? and also is there anything that mum could be doing at home to ensure she is treating the clots in the most appropriate way? The doctor has said that she will have to inject herself with 40mg of clexane in the morning and 40mg at night.
It is so annoying as she was doing really really well and now this comes along 🙁

Hope that Slim is doing okay at the moment. My thoughts are with you both

Love Helen x

[eveParticipant]

Hi Helen

Slims is a long story,so will keep it short he was on CTD myeloma trials, and three months on,after going to A&E on Easter Saturday and sent home,Emergency admission on Easter Monday 10 ITU with Septic Pneumonia and 22 over all in hospital.
he stared the trials again 2 weeks after leaving hospital,did 6 cycles only to find Myeloma had increased to 80% in bones.Started Velcade and is working.
Through out all this he has injected himself everyday 100 mg clexane.Being on Clexane will stop any blood clots forming,I think you have to hit a balance your mum needs to keep her body moving plus rest.as I said 6 months is the least you should have on Clexane.

Most of these chemo drugs are known to form blood clots,I think it should be the norm to have blood thinning drugs,because as in Slims case there is extra damage to his lungs,and SCT is now in question.I suppose it all comes down to cost a Clexane injection cost £15.my Gp was not keen to prescribe because of cost,took a telephone call from the hospital,it all seems a battle over money.

As I said try not to worry your mums on the right treatment ,it did not stop Slim having the CTD,only came off it for a short. time because he was so ill,but today he is much better and put on weight,and ev eryone says how well he looks,some even tell him they thought he would not make it,that,s how bad he was.
The hospital are so pleased with his progress,and my new GP said she has never seen anyone improve so much with the damage he has,so at the moment it.s all good news. Love Eve

[DaiCroParticipant]

Hi Helen,

I have had 2 DVT's (Deep Vein Thrombosis) since being diagnosed with cancer (initially Bone Cancer amended to Myeloma 14 months later). The 1st DVT occurred after extensive radiotherapy, the 2nd during Velcade (although my consultant has informed me that DVT's are not normally associated with the treatment).

On the first occasion I was put on Clexane for 3 months, followed by a year or so on Warfarin (which I came off at the start of my SCT treatment and never went back on it).

The second DVT occurred this last July and I have been on Clexane (150ml – once a day) ever since. My consultant has told me that I will stay on 150ml for 6 months and then switch to a once-a-day 40ml for maintenance.

To my knowledge blood clots end up in the lungs from elsewhere… usually the legs… where they travel up through the stomach and through the heart to the lungs… your Mum has been fortunate that hers have not caused a pulmonary embolism and the Clexane should dissolve them in time. As for the time to dissolve – everyone is different. We can offer guidance through our experiences but for treatment and future possibilities I strongly suggest that you ask your Mum's doctors.

All the best

Dai.

*** Eve, I have had the same costings debate with my GP. The hospital supplied the first 3 months but when I went into remission my lead nurse told me to go to my GP. To be fair he supplied the first and second lots but asked how long I would be on Clexane because there were cost implications… especially for the 150ml doses. I think the reduction in dosage and the accompanying lower costs should keep him happy… hopefully. 🙂

Dai.

[eveParticipant]

Hi Dai
The cost for Slim is topping £3000 as now in 8th month,but if you compare that he was in ITU for 10 days at a cost of £2000 per day its a no brainer.
Slims history is grandmother plus mother died of pulmonary embolism,his mother a year September age 85.
I have had some response to my complaint,went for start of 6 cycle today and HALLELUJAH HALLELUJAH,even the nurses were beaming drugs were there Velcade and Zometa,but they had forgotten one drug,the nurse took great delight in pointing this out to the pharmacy,we said we would collect on Friday,rather than wait 2 hours LOL. love Eve

[MinParticipant]

Sounds like they are getting the message Eve, next time no doubt it will be spot on!
Do you remember the days when you got a prescription from your Dr and you took it to the chemist? not Phamacies in those days.
One man measured out and mixed up your medicine and counted out the tablets by hand and He wrote the label by hand.. you waited about 5 minutes in total.
Today everything is in pre packed boxes packets or bottles and the labels are printed by computer but still you wait for half an hour. This is called progress???.
Oh for the olden days when we collected rose hips and sold them to the chemist Happy Days.
Love MIn

[eveParticipant]

Hi Min
The nurses are very good and never seem to stop,I asked about the strike today and the answer was no we cannot strike!!!!!!
I also asked how long they would have to work for there pensions all of them said to 68 years old!!!!!!
I think at the age of 68 working in a job like that they would not survive it without making many errors.

My main complaint was lack of co-operation between departments.I have been told to expect a reply in January!!!!!In my earlier job i dealt with complaints,i found if you dealt with it and nipped it in the bud stage,it was over,but once you explored it,you opened up a whole new set of problems,and wasted a lot of time in meetings,with no one leaving happy,and it looks if this is going to happen!!!!what ever happened to common sense?

Will see what Friday brings. Love Eve

PS Dai blood clots can develop any were in the body,but most common in legs.that,s why they like you exercising your body.

[helenpageukParticipant]

Hi Dai

Thanks for the reply and so sorry to hear that you have been through it as well. How did you find being on the Warfarin? I pressume that mum will be moved onto this shortly. She goes to see her consultant on Wednesday next week so hopefully we will find out then if they plan to take her off the revlamid. I hope not as it appears to be a good drug to be on.

I guess the clots in the lung may have come of the DVT in her leg so we are praying that now they have been found, the clexane will act at dispersing them.

I wish you well for the rest of your treatment

With best wishes

Helen x

[helenpageukParticipant]

Hello Eve

Wow, Slim sounds like a real fighter and I am so pleased that things are going well for him at the moment. it is amazing how much the human body can take isn't it. I would imagine the chemical compound of our loved ones is pretty mind blowing at the moment!.

Mum was initially very sick with the Clexane however the anti sickness drugs seem to be working so she is now able to eat again.

Nothing seems to phase my mum. She went out for a walk last night with my dad to the end of the road. It is literally only a ten minute walk however she was determined to do it and she did it! I have spoken to her this morning and she is off to a craft type barn today with dad which is really good for them both.

I recently went to the Myeloma info day in Birmingham (which was very good) and the haematologist there said to try and do something nice every day and I keep emphasising this to mum. I think as long as they listen to their bodies, they can continue to live a fulfilling life.

Take care Eve and send my best wishes to Slim

H x

[DaiCroParticipant]

Hi Helen,

All things being equal I would prefer to stay on Clexane rather than switch back to Warfarin. With Warfarin the object is to get your blood to a consistent viscosity (thickness)… something like 3.0 to 3.8 for instance. To achieve this you are put on a strength of Warfarin and then your blood is measured after a week. Depending on the reading your daily intake, in tablet form, is either decreased or increased. Once they get it right it is a matter of keeping it within the set parameters.

The initial set up and measurements are usually conducted at a Warfarin Clinic at the hospital… but some GP Surgeries offer this service too. After the readings are settled your weekly test (INR) can be carried out by a district nurse at your home. The nurse comes and takes the blood and checks everything is okay and later that day you receive a phone call from the lab telling you the strength of Warfarin to take for the next week. The dosages may vary slightly from day to day but will be something near to each other. Apart from the once weekly blood test it is painless with no side-effects (in my experience) but it is one more (important) medication to add to the list and you are tied to the district nurse visits. Warfarin takes a while to dissipate from the body and it can interfere with certain treatments… the doctors prefer Clexane because it only lasts for 24 hours… i.e. your blood is only thinned for a short time, whereas Warfarin keeps it thinned until the medication gets out of your system which can take quite a while… not good for certain procedures etc.

I prefer Clexane… after the initial 6 months of 150ml I will revert to a maintenance dose (40ml) and it is generally painless to administer (occasionally you can get bruising if you inadvertently rub the insertion site after injecting, which can be a bit sore) and my life is free of nurse and clinic appointments.

But that's just me. 🙂

Dai.

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