[christaylorParticipant]

Hi Karen, I am Chris and was diagnosed in June 2014 at the age of 61, I can understand that you are worried about your Dad and hope that messages like these will help to reassure you.

After I came out of hospital I undertook CDT treatment and after about a year I was able to have a stem cell transplant. However it was pretty tough along the way but it is manageable and you can get really good results. I had terrible amount of bone damage, ribs, spine and both legs were the main issues and since the the SCT I’ve had 3 vertibrea cemented and my right femur has now got a steel rod inside. I still need to take heavy dose of pain relief for the other parts of bone damage though.

like your Dad yes had skin rashes you may find other side effects due to the toxic treatment hence why your Dad will be given lots of support drugs. The pain that he is in I expect is due to bone damage due to the Myeloma the Consultants will be aware of this once all the skeletal scans are completed. You may hear the term Lytic lesions, I understand these are holes in the bone, and bone thinning which causes bones to break. But they can give Bone strengthening treatment Zometer once a month which helps the bone damage.   I at the beginning was in a terrible state but now I have managed to have a holiday and I go for little walks or potter around in the the garden.  Like Peter has said by reading the posts you can find lots help and information and I sincerely hope your Dads treatment works well along with your support I am sure it will.

take care CT.

[christaylorParticipant]

Hi Dino,  I read your post with fascination and admiration, it brought back memories of Feb/Mar this year. The pain you describe while doing the cell boosting injections is something that I found underestimated wow it was so painful, my friend who was injecting the same time as me ended up in A&E with chest pain it was that bad. Your positive attitude even the root cause joke shows how strong you are and I congratulate you for that. Take that forward for your coming SCT it will be the best medicine.  When you have the transplant you may have further GCSF injections to kick start the cells, I found that period waiting for the cells to engraft the most scary. But once they do engraft I got a massive up lift. I wish you all the best for your pre medical, and your transplant .

Take care CT.

[christaylorParticipant]

Hello, I had my SCT in March this year, and yes had a tough time. I think most of us don’t like to be too graffic for fear of putting off, and also adding to their anxiety. From what you describe is about right although you will find everyone reacts different. I had a pretty torrid time for about 10 days, with infections and all sorts the worst headache ever, nose bleeding, unable to eat etc etc. however you do turn the corner and slowly things improve.  First your able to eat a little then the throat starts to get better, and yes you just sleep all the time. Even after all this time I can sleep all evening and night, then get up in the morning feeling exhausted.

With your Mum I am sure she will be ok, the Doctors & Nurses have plenty of experience with SCT now so know what and when to do it. Drink plenty, ice lollies, yogurt, and all the anti sickness drugs you can have.

Take Care, CT.

[christaylorParticipant]

Hello, Sorry to read about your Dad and that he has come off Thelidomide, due to the side effects.  The CDT treatment has proven to work very well, and yes you get the nasty side effects with these toxic drugs. When I was on CDT the Thelidomide dose was 100mg which I took late at night with Horlicks and a biscuit. I did get neuropathy in the fingers and toes, like tingling numbness.

But the major pain that I have had as been down to bone damage, the vertibrea damage caused serious pins and needles in the legs especially when I passed urine. And also meant I could not walk much. So can it be that your Dad is suffering with bone damage and it’s not the side effects of Thelidomide ?.  Has he had a full skeleton x-ray ?, to check for bone damage bearing in mind he stopped taking the Thelidomide .

Good Luck, Take Care.

CT

• This reply was modified 9 years, 2 months ago by  christaylor.

[christaylorParticipant]

Hi Graeme,   I had my SCT in March this year in Kings College Hospital London, for me it was tough however managed to get through it, Like the posts say ice lollies and yogurts for the throat and sleep don’t worry about how much. There were a number of blood transfusions and Platlets transfusions even after being discharged from hospital. I think recovery is really individual in fitness levels, age, etc etc but it’s nice when after 100 days you go for the post SCT bone marrow biopsy then told that you’ve had VGPR very good partial response. For me almost 6 months later  can potter around doing little jobs, walking for about 30 minutes or so. But I get really fatigued come tea time so go to bed, next week I start the repair stage when I go into Medway for spine vertibrea repairs, then sometime later am due to have my legs pinned which hopefully will reduce the amount of pain I am in. So Graeme good luck with SCT and the future I wish you well go for it.

Regards CT.

 

[christaylorParticipant]

Hello, my name is Chris also and was diagnosed with MM June 2014, by that time it had servealy damage lots of bones. My legs and spine in particular,  I decided to go for the standard treatment which was CDT tablet form, so that was the chemo, steroids, and Thelidomide, my kappa light chain reduced to 64 from 1250. I then had a stem cell transplant March this year and at this time in what they call ” very good partial response ” and at present apart from pain relief I am drug free. The orthopedic are going to repair my spine in Sept, and the legs to be pinned in November ( might delay the legs because we want to go away for Christmas ). Yes it has been a complete life change for we had so many plans, I was active and could do most things having just retired at 60..some days I am so sorry for myself, other times frustrated. But also other times I am ok and still plan for holidays etc once I  am fit enough.

so I really feel for  you and your Husband Chris the fact that you have been married for those many years prove that you are both strong and understand each other. I am sure it is purely the illness why he is not his normal self, I can truly say how painful it is, then all the side effects of the drugs which again are not nice and cause mood swings. I sincerely hope that Chris manages to get through this stage, and like me gets to a point where he is drug free for a while then at least hopefully he will be more like his old self.  Wishing you all the best, Take care CT.

[christaylorParticipant]

Hi Brian, first good luck with the SCT, I hope it all goes through soon and with no complications. I had my SCT in March and slowly reducing the various Meds that I was on once my blood levels stablelised the last tablets I am on is Aciclovir which the Consultant said would be on it for 6 months. I get my post 100 days result next week so at this time I am not sure if I am in remission or at what level. So the medication I expect will depend on your blood levels getting back to something like normal however long that takes. On the bit about inoculations and having them re done the Consultant told me that if you use your own stem cells then it’s not required, only if you have had donor stem cells, which I suppose makes sense. I hope this is of some help, once again good luck.

CT

[christaylorParticipant]

Hello Susie, I do have bone pain after a Zometa infusion especially my femur leg bones and back I do suffer this pain as a matter of course but it certainly seems worse after the infusion. I normally have to take extra pain relief for this period of 3 to 4 days then it settles. I have mentioned it to the nurses who give it to me and they say the bone pain is likely to be the Zometa.  I feel that although it’s painful if the Zometa is really strengthening my bones then a few extra Paracetamols it’s worth doing.

Take care CT.

[christaylorParticipant]

Hi Mavis, sorry for not getting back sooner, Re: OxyContin I am not too sure about the sleepy  but probably yes. I am only 3 month post SCT and have been sleeping so much, prior to the transplant the tablet is a 12 hour slow release. I take it at 8am & 8pm so with the evening one I am already in bed due to pain & fatigue therefore if I sleep is not really an issue.  I hope you get a different type of pain relief that really works.

Take care, CT.

[christaylorParticipant]

Hello,

Thats strange because I also had SCT in March and although I already had lots of bone damage therefore have painful legs & back. I have noticed that my shoulder is really painful, and my lower legs painful when I first get out of bed in the morning. The other strange thing that happens is when I have a wee my lower legs feel like they are being prickled with tiny pins ?. Not sure if anyone else has experienced that post SCT . Iam due to see the Consultant the end of June so i try to remember to mention it because I don’t understand.

CT

[christaylorParticipant]

Hi Mavis,

Sorry to read about your bone pain and fully understand what is like having bad bone damage myself. Before I was diagnosed I was eventually put on Tramadol which I was taking in large amounts however once diagnosed because I was on the maximum amount of Tramadol they put me on OxyContin which I am still on. I think it is Morphine based and is a 12 hour slow release tablet,  I take one in the morning and one in the evening. The dosage is 40 mg which is has low as I can get down to, sometimes I may take a Paracetamol or even liquid Oxynorm when the pain has been too bad.

I hope that they can help you with it or at the very least reduce it to an acceptable level.

Good luck Mavis, Take Care.

CT.

[christaylorParticipant]

Hello Michele,  Thank you for the information ,  yes have been keeping myself very much in isolation, my appetite is slowly getting back along with the taste buds.  I just hope that my Neutraphil level start to rise, they have given me some more injections to promote this, but I really wanted them to come back on their own accord. The diet suggestions I will carry out and hope it all ends up fine. I am due to see the Consultant at Kings College on May 13 they hopefully will tell me what’s happened. Again Thank you for your message.

Chris.

[christaylorParticipant]

Hi  Eva

i fully understand the worry and frustration you must be going through, and I am sorry I cannot allay those for you. I can give just a personal account of the very little I know regarding blood test and diagnosis of Myeloma.

After hospitalization,

I had no Paraprotien level indicated, but my Serum free kappa light chain reading was just over 1200, and after 2 weeks of further tests which were Bone marrow biopsy, then Bone biopsy, and the Bence Jones urine. CT scan, MRI scan, etc etc. The Hymotologist Consultant finaly came to give me the result of Non Secretory Multiple Myeloma hence why it had not been picked up on a standard blood test. It was very frustrating for all my family waiting for the result but I think because of its odd nature they had to be certain hence carrying out all the tests.

Since my diagnosis with treatment the kappa light chain has reduced the lowest was 30,  on Monday I am due for Stem cell harvesting for which hopefully will have a stem cell transplant early March.  So even after a very slow diagnosis  you can still get it down with the treatment available.

I wish you well, and hope you get your results soon with the correct explanation.

CT

 

• This reply was modified 9 years, 9 months ago by  christaylor.
• This reply was modified 9 years, 9 months ago by  christaylor.

[christaylorParticipant]

Hi, Sorry to read about your husband and fully understand how you both must feel also how life can change so quickly.

I did not have that reading of kappa light chain figure mine was approx 1200,  the reason why I thought to reply is that most people quote Para protein levels and rarely kappa light. I am no expert in any respect of this but my thought is that having Non Secretory MM shows up with kappa light testing ( please correct me if wrong ).

Like I mentioned mine was approx 1200 before diagnosis and in that time caused considerable bone damage, however my treatment consisted of 7 cycles of oral CDT and the level dropped rapidly hopefully your husbands will drop rapidly.  I am also getting ready for SCT it was put back a month due to a blood clot in the leg.

Their is a web site called Myeloma Beacon, it is a USA  forum and my wife has read about patients whose kappa light chain levels are like your husband and higher, so you may wish to check it out.  I would only say that some of the drugs and readings differ in respect of being American.

Regards Chris T.

[christaylorParticipant]

Hi Julie, read your post and wish you all the best with the SCT,  I hope to do the same in the near future,  when i was diagnosed with MM back in June I chose the standard treatment not sure why I think I was still in shock at that time and had little time to make my mind up. Anyway I am on my 7th cycle of CDT and my kappa light chain has reduce from 1200 to 34 albeit I still await for blood result from cycle 6 so could be somewhat lower, hence getting near to SCT.

The ride on CDT has been a roller coaster, with the side effects, taste buds yuk, constant battle with constipation but managed to keep it under control, terrible shakes caused by the Dex steroids being on a very high dose,these have now been reduced by half so hopefully the shakes will reduce. Oh and my ankles keep swelling and go a funny shape so sometimes I wear tight flight socks to help keep feet in shape.  So that is a slight insight as to the standard treatment but it is like others say it’s very individual, my own opinion at the moment is that if I can get to SCT and get into some sort of remission then it was all worthwhile.  I hope all your side effects soon disappear so you can enjoy a more normal daily life especially with Christmas looming, Good Luck.

Chris.

• This reply was modified 10 years ago by  christaylor.

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