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Hi Lottie,
I am also one of the forum volunteers. I don’t know why but I have only just picked up your original post so I apologise for not replying sooner. Looking at the posts that have been sent to you already, there is not much more to say other than the disease affects different people in different ways, and although it is not curable, it is controllable, and there are many different treatments available, so if one regime doesn’t work well, they can try a different one. Also, there are new treatments coming out all the time, but in my view as a sufferer, one of the best things you can have is a positive attitude. For me, it was a bit of a wake-up call to say that none of us are here forever, and although I know nothing is going to happen to me in the near future, that I shouldn`t put off till tomorrow when I can do today. I know it is difficult to do, but try to put it at the back of your mind and go out there and enjoy yourself. There are lots of people who have lived with the disease for many years, and you could be one of those as well.
Don`t let it affect what you do or how you enjoy your life in the way that you want to if you are physically able to. You will find ways to cope, and with the support of medical science, and family and friends, the future is by no means necessarily bad news.
Please keep us updated as to how you are getting on.
Regards, Tony
Thank you Tony for your lovely comments.
I should be starting treatment next week. The consultants appointment was a bit overwhelming when he mentioned all of the side effects you may get. Then I had to get bloods after appointment and then found out today that the nurse had put the wrong caps on the vials and made an error on my name so have to get the bloods all done again. I suppose it keeps you occupied.
I think it is the waiting time that is the worst time, just want to get on with the treatment.
Best wishes
Lottie
My first cycle of DVTD has completed. Had to miss one due to low white cells.
Had my first consultants appointment on Monday. No longer anaemic and the white cells are rising. Consultant was pleased with the results. My paraprotein levels at initial diagnosis was 30. He didn’t have results of blood test for the up to date figure as that takes a few days as has to go to main hospital.
I was advised that as my proteins were lower at diagnosis they will probably come down slowly so not to get alarmed if this happens.
Started Cycle 2 yesterday.
All in all a good result hope it continues.
Lottie
Hi Lottie,
Great to hear that all is going well! We are often in the same boat waiting for dad’s paraproteins but the hospital usually can give them out if we phone a few days later so might be worth trying that if you want to have them before your next appointment. Dad’s paraproteins also took a little while to come down – I think it was cycle 3 before we saw firm results but great all the other markers are improving 🙂 Long may it continue xx
Thank you for your reply and info on your Dad’s situation that helps a lot. It is always difficult when something is so new.
I have a call with the Clinical Nurse tomorrow so hopefully she will be able to give me the results.
I was really pleased about the consultation. I have been getting bloods done twice a week for the last month which was time consuming and veins were getting sore. This week I don’t have to have bloods done tomorrow so that was good news too long may it continue.
Best regards
Lottie xx
Hi Lottie,
So glad your poor veins have had a break. Dad’s down to once a month for his so hopefully you wont have to have quite so many in the near future. Hope the call with your clinical nurse went well. They’re usually very helpful and supportive. Hope everything continues to go well for you xx
Hi KH0305,
Thank you for your response.
My protein results were not back they have to be sent away and can take up to two weeks so have a call tomorrow so maybe they will be back by then.
My blood test result from Friday was really good my neutrophils have risen from 1.5 to 6.5. My total white cells have risen from 3.2 to 6.5 so no longer neutropenic. My neutrophils in January were 0.6 which was quite alarming.
The Clinical Nurse wants to have bloods taken before each treatment for this cycle only just to make sure the cells don’t drop so happy to do that. After that it will be down to once per month.
I think my veins will enjoy the break.
I am hoping they will not drop again.
Best regards
Lottie xx
Really good news Lottie! As you say, its easier to cope with the bloods when you know a bit of a break is coming up!! Also hoping they don’t drop again but it seems like everything is going in the right direction which is fabulous xx
Hi Lottie,
I am really pleased to hear things are going in the right direction for you. It`s hard to deal with sometimes, but hopefully, it will all have been worth it in the end. Please keep us updated on how you are progressing.
Regards, Tony
Hi Tony,
Thank you for your message. I am much more organised now as I know what to expect. Hopefully I won’t have to have so many blood checks in Cycle 3.
Regards
Lottie
UPDATE
Hi everyone,
Just finished Cycle 2. White Neutrophils jumped mid cycle from 1.5 to 3.5 which was short lived as the following week they went down to 1.9 and then 1.8. This week they have moved up to 2.0. Not sure if I was given the correct information as the huge jump seemed a bit high to me.
I still have not received any protein levels, the last number on my record was April which is quite concerning. I did have them checked at last consultants appointment however the results have still sitting at “to be reviewed” so I am hoping that I will get an update on Monday at next consultants appointment. I don’t know how often the levels are checked as was never told so presumed it was once per month then my CNR told me that she had checked my weekly blood checks the protein levels have not been checked. I think the problem is when i turn up for blood checks each week I am always asked for blood paperwork which I never have so I don’t know what I have to get or where this paperwork comes from, I presumed it would be on my records. Again will check with consultant on Monday. My first consultants appointment was very overwhelming and did not take a lot of it in.
I started to get tingling in my thumb and then last week woke up with burning pain in my feet and lower legs and my right arm was tingling up to elbow so called my CNR who spoke to Haemotologist and told me to stop taking the Thalidomide over the weekend and the CNR would call on Monday to see if I had any changes. The burning pain in legs has stopped as has the arm so just slight tingling in my left thumb. I will be off Thalidomide for ten days and then they will review and if things have still improved, probably start me on a lower dose to see how things go or change the treatment. I was told yesterday that any changes I need to report straight away as if the tingling is left it is difficult to reverse. So, I am hoping things will settle down. I was also told not to worry as this is quite common.
The treatment was all going so well too.
Best regards
Linda
Hi Linda,
Thanks for the update.
Sorry to hear you’ve started suffering with the tinging. Unfortunately it is quite a common side effect but good to hear that it has subsided a bit. Definitely agree with your team to report anything – the message to us was much the same with dad’s treatments – don’t feel that you have to put up with side effects. They can’t always do something but if there is something they can do to treat or improve the side effects they will. I hope when you go back on to the thalidomide it is better for you. Don’t worry too much about stopping/changing levels of different meds. We have had that a lot over the past 9 years for one reason or another and dad’s done so well. As it is such an individual disease there is an amount of having to try different approaches with each patient from what I have experienced.
We have had random results like yours in the past too where there’s a sudden quite large change then it goes back to more expected level. Our consultant says it happens and that’s why they monitor the bloods regularly as they are looking for a pattern.
I’m surprised you’ve not had any paraprotein results yet. Sometimes with dad’s they have them but don’t always report them to us. Have they been giving you light chain results? We use those as well as a marker of how dad is doing. Hopefully they will get you some results soon to put your mind at ease xx
Hi kh0305,
Thank you for your response, really appreciate the info you have given me.
Glad to hear your Dad is doing well and interesting about the bloods too.
No I haven’t had any info about light chains either so that is one for the consultant on Monday.
To be honest I have had very little info, just how the bloods are doing. The hospital is extremely busy and the nurses are doing a great job. The Clinical Nurse did say she checked the blood tests and the protein levels had not been tested but I know I had bloods taken before the consultants appointment at the end of June and protein levels were getting checked as he had advised if could be a few weeks before results were through as they had to be sent away. I will ask the question on how often this is tested.
On the plus side my finger nails started to have a dark colour under the nail from January which was quite alarming this is now clearing up so something is changing.
I am hoping that they will restart the Thalidomide in ten days as I was feeling ok with that and it was giving me a good night’s sleep. When I woke up with the burning pain and pins and needles it was quite alarming.
Will update next week after consultants appointment.
Best regards
Lottie xx
Hi Lottie,
During my induction treatment (which was velcade, lenalidomide & Dex, so a bit different from yours) I experienced tingling in my feet. My consultant felt it was caused by the velcade and stopped the drug temporarily then reduced the dosage. A while later the same thing happened again, tingling toes, and he further reduced the dosage so that I ended up on 50% of the standard dose of velcade. Nevertheless my paraproteins continued to go down and although they were still there by stem cell transplant. However I had a Complete Response (ie no apparent paraproteins) by the end of the stem cell transplant process. I’ve always thought it seems odd that there is a standard dosage for most of these drugs when we can be such different weights etc.
I have not had any further trouble with neuropathy so far.
My neutrophils bounced around a fair bit during treatment, I think the time during the cycle that the blood tests were taken perhaps had a bearing on this.
If you are unsure what blood tests are being done, you can always ask the phlebotomist doing them to tell you . I needed thyroid tests too & sometimes these weren’t on the system so I got used to asking, or ringing the myeloma nurse before I went to ask for them to be put on the list. Although the phlebotomist can’t do tests without authorization, if the test isn’t on the system he or she can ring the myeloma team who can authorize it (at least where I am treated).
Hi Mulberry,
Thank you for your detailed response.
So much good information in there. It is always a worry when they stop treatment but I have been assured that won’t affect things so fingers crossed. The nurse said this was really common and I will probably start on a lower dosage to see how things go if persists they will change the treatment. I was enjoying the good night’s sleep Thalidomide gave me too.
I appear to be on high doses of everything, my Thalidomide is 100 mg per night. When I queried the high doses the nurse advised that they start people on the high doses so they have room to reduce if required so that probably makes sense.
Great news about the stem cell and your protein levels you must be pleased with the results.
I have consultants appointment on Monday so will ask him what bloods I should be getting done.
They did say as my Neutrophils were up and down that they would blood check before each treatment for this cycle only. Hopefully when I start Cycle 3 next week the blood tests will reduce.
I think my veins are used to all the blood tests now.
Thanks again.
Best regards
Lottie
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