Hi Tony,
Thank you for your lovely response.
My dental check up was good so all good to go with the bone strengthener next Cycle.
My proteins are now sitting at 3.2 so that was good news.
I also received a letter and info pack from the SCT team who asked me to call with contact details they advised I may receive a call at short notice to discuss the process so looks like things are moving along nicely.
Going to enjoy a week off from treatment saves a lot of car trips.
Hope you are doing well.
Best regards
Lottie
Hi kh0305,
My brother in law has turned the corner and out of danger so we can all relax a bit.
My proteins are now sitting at 3.2 so that was good news.
I have received a letter from the SCT team along with an information book. I had to call them with contact details as they advised I may receive a call at short notice to discuss the process so just waiting on the call. Looks like things are moving along nicely.
Best regards
Lottie
Hi Lewisboy,
I am based in Scotland.
This is my experience to date obviously your Dad’s treatment maybe different from mine but will give you an insight.
I was diagnosed in May this year. I had no bone pain just low Neutrophils. I had a CT scan which was normal and then a bone marrow test which confirmed Myeloma which was a shock to the system.
I had a telephone consultation to advise the results and received information by post to read on the treatment that was proposed along with a Myeloma information book.
Two weeks later I had my first consultants face2face where I was given forms to read and sign. I had my height, weight and blood tests done and a echocardiogram the following day, treatment commenced the following Tuesday.
My treatment consists of Daratumumab injection in the stomach and Velcade injection, Dexamethasone steroid and Thalidomide tablets.
The Dara and Velcade are both given on the first two Tuesdays of the cycle, I have another Velcade injection on the first two Fridays. The third and fourth week I only have the Dara.
The Dexamethasone is given as a pre med an hour before the injections and I have to take another dose of steroids the following morning.
The Thalidomide I take each evening before bed as they make you sleepy.
I was also given a bag of meds to take at home which consisted of Blood thinners, Omeprazole, Aciclovir, Antibiotic and a kidney tablet. The Antibiotic and kidney tablet stopped after Cycle 1.
My proteins were 30 at diagnosis and are currently sitting at 3.2 and I am halfway through Cycle 3. I have been put forward for a Stem Cell Transplant and waiting on a phone call.
So far I have had very few side effects, a bit of tingling in the fingers and toes so the Thalidomide was paused for 10 days and dosage reduced from 100mg to 50mg.
I am on Cycle 3 now and only receive the Dara on the first and third Tuesday and the Velcade remains at two injections for the first two weeks so I have a week off from injections.
The Consultant will propose treatment for your Dad it may not be the same treatment as I am on but hope this information is useful to you.
If your Dad does have the same treatment the first appointment is about four hours as they like to hold on to you incase you have any reaction to the treatment so worth taking a phone charger and something to read. I also took a sandwich as I was in over lunch however they did offer me soup and sandwich and you get tea and coffee. I took water with me too.
I cannot fault the treatment I am receiving. The staff have been brilliant and you have a Clinical Nurse to call if you have any questions. The Clinical Nurse will also call your Dad the day before treatment to check how he is feeling and if you have had any side effects.
I was advised that the cycles would be between 4-6 depending on how the proteins came down.
I hope your Dad starts his treatment soon.
Best regards
Lottie
Hello KHO3O5,
As per responses to Tony and Kevin apologies for late response we have had a family illness.
Thank you for responding and the information. I have heard about the mucositis, doesn’t sound very pleasant but heard like you say to take ice cubes constantly appears to do the trick.
The hair loss I was advised about at start of treatment. I am on Chemotherapy and was told hair loss would not happen but hair thinning would so finding bits of hair around the place so maybe by the time the SCT arrives the hair will be much less to shave off.
My steroids have now reduced from 40mg on a Tuesday and Wednesday to 20mg which I am pleased about. I was finding the high dose was making me emotional so I am hoping this will reduce with the smaller dosage.
My Dara is now fortnightly from Cycle 3 and Velcade still 4 for the first two weeks, this means I have a free week at the end of Cycle 3 which I am looking forward too.
I am going to be getting the bone strengthener from Cycle 4 so advised to see the dentist before this starts so have an appointment this week for a quick check. I am confident everything will be ok as I had a dental check up before treatment however you never know what the treatment is doing to your teeth.
So glad your Dad is doing well and he had a good remission.
Thank you again for your response very much appreciate it and the advice.
Lottie xx
Hello Kevin,
Apologies for the late response as you will see from my post to Tony we have had a family illness.
Thank you so much for responding and for the information which is really helpful. I have heard that you do get cravings for different food wonder what mine will be.
I will make sure I have plenty to do. I started on the Family Tree but due to recent circumstance I have not returned to it, I can do most of it on the laptop so usually once I get started on it I can’t stop so will carry on with that and look out some books etc too.
Glad you are still in remission, long may this continue.
Best regards
Lottie
Hi Tony,
Apologies for late response. We have a few medical issues in the family so been a stressful time as my relative was not responding to the treatment and saying goodbye to his family, thankfully he has turned the corner and improving.
Thank you for your detailed response on the SCT, that is most helpful. I am waiting on the appointment from the team and I have been told it will be carried out at The Beatson Centre in Glasgow as I live in Scotland so not too far away. My consultant could not put a timescale on it as she said they were very busy and all depends on bed availability. Good to know about the fridge/freezer will make sure I have plenty of yoghurts etc.
I must admit I am not looking forward to the strong chemotherapy, I knew I would lose the hair so probably shave that before I start. Just side effects concerned about.
Regards
Lottie
I had a lower does of steroids in my take home meds to take when I was in for the start of Cycle 3 so I called my Clinical Nurse who checked the system and confirmed that I only have Dara every second week this cycle so missing out 2 weeks. I still have the 4 Velcades during the first 2 weeks which means the last week of Cycle 3 will be injection and steroid free so looking forward to that. Maybe this is to do with the proteins coming down. At my first Consultant’s appointment he did say from the 9th week Dara was fortnightly however speaking to other people who were in for treatment told me that Cycle 3 and Cycle 4 were the same as Cycle 1 and 2 – probably different for everyone.
My blood checks are now down to middle of the month and at the start of the new Cycle so pleased about that too as had to travel to the hospital to get that done, just felt I was never away from there for a while.
So glad to hear that you are still in remission, long may that continue.
Thank you again for your detailed response.
Hi everyone,
I had my consultants appointment today and my protein levels have come down from 30 to 5 and that was the blood test carried out at the end of June.
My Haemotologist is putting me forward for a stem cell transplant she explained quite a bit about it. She said I would probably receive a video call about the treatment and not to get too alarmed at the information they will give me as they have to cover all aspects.
Starting cycle 3 tomorrow so all good.
Cannot believe they have come down so quickly.
If you have any experience of a stem cell transplant and what to expect would be greatly appreciated. I do appreciate that everyone is unique but any tips would be appreciated.
Best regards
Lottie xx
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
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
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 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
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
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
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
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
