[meganjaneParticipant]

Hi Andy,

It is such good news, Phil and I are both so happy for you. Long may it continue.

Megan

[meganjaneParticipant]

Dear Sarah,

Thinking of you xxx

Megan

[meganjaneParticipant]

Hi David,

Enjoy the dex free nights, best wishes for a speedy recovery from the op and fingers crossed for the blood results at the end of August. You had such an amazing response to the Rev that I am sure if there is a tiny blip after a month off it will soon be reversed when you start the rev again.

Do you mind me asking how your neuropathy is now? I hope it has improved/gone away?

Megan

[meganjaneParticipant]

Hi Vicki,

Fingers crossed it will be a slow relapse. It is hard to stop worrying but you just have to take it a day at a time. It is a good sign that Colin is feeling well and that the blood results are good. We found out in December that Phil’s pp had been rising for five months and we were sure he would be on treatment by February. Here it is August 2014 and a year since he started relapsing. The pp number is still on the way up but very slowly and Phil is feeling pretty good so no need for treatment yet. Phil’s next treatment may start in October or it may be next year, as with everything mm related everyone is different but numbers rising does not automatically mean treatment starts again right away. It is hard watching and waiting but Phil and I are enjoying the time he has treatment free.

I hope Colin continues to feel well and that after Christmas you post to update us that are still watching and waiting 🙂

Megan

[meganjaneParticipant]

Hi James,

I was unable to attend my husband Phil’s last appointment with the consultant and Phil asked if the doctor would mind if he taped the converstaion as normally with both of us there one of us will remember what the other one forgets. The doctor did not mind at all so it may be worth asking. Phil used a device on his phone to record the appointment and we were both able to then listen to it together later.

Megan

[meganjaneParticipant]

That is brilliant news Keith, long may it continue 🙂

Megan

[meganjaneParticipant]

Hi Vicki,

Sorry to hear this news and I hope the next appointment in 6 weeks brings better news. It is hard to come to terms with the numbers going up when you spent so long waiting for them to go down :-(.

I know from what I have read that light chains are more volatile than pp numbers and they can go up and down depending on infections and other random things so you may find it is just a blip. A rise also doesn’t immediately mean treatment, many things are taken into consideration including all the other blood results and how Colin is feeling.

I know everyone is different but for Phil his pp numbers slowly went down during treatment and got to 5 before the SCT (Dec 2012) and then took another 6 months (July 2013)to go down to 0. We then found out in December 2013 that the pp numbers started rising in August 2013 so he actually only had one month of complete remission. This hit us both very hard and we assumed he would be back on treatment within a couple of months but here it is June 2014 and Phil is still feeling fairly good, the pp is still rising month on month but no need for treatment yet as everything else is okay.

It is awful when the numbers start going up but I am now concentrating on each day as it comes and trying to remember there are many new treatment options in the pipeline and that the next treatment that Phil has may give him a longer remission than his first line of treatment did.

I am thinking of you and Colin during this difficult time, Phil and I call this the limbo stage and it is hard to come to terms with.

Megan

[meganjaneParticipant]

Dear David,

That is wonderful news, long may the excellent remission continue 🙂

Thank you for sharing as it gives me hope that Phil’s next line of treatment may give him this type of result.

Good luck on the 7th.

Megan

[meganjaneParticipant]

Hi Maureen,

I can’t help too much as my husband Phil’s MM is monitored by paraproteins but two months ago his Lambda Light Chains went up to 13.9 which threw the ratio out of normal range. I know these are tiny values but his consultant said it was probably just a blip as Phil actually has Kappa Light Chain Myeloma (although after the first cycle of treatement in June 2012 the Kappa returned to normal). The next Light Chain test Phil had showed the Lambda back in normal range so for Phil it was just a blip.

I hope at the end of cycle 3 Ian sees a drop in the FLC numbers again.

Megan

[meganjaneParticipant]

Hi Sharron,

Welcome to the forum, sorry you have had to join us, especially with such a complicated diagnosis. I know from experience of my husband Phil’s diagnosis of MM how complicated it can be to explain to people so I can only imagine the difficulties you have explaining LCDD.

My husband was diagnosed at the age of 43 and had his SCT at the age of 44 after 5 months of treatment. Although the SCT process was not pleasant and Phil unfortunately caught a bug while he was in hospital so ended up staying in for 24 days as Eve says it is doable.

I do hope you find some help to sort out your finances. We applied for Phil’s benefit by ourselves but the form was very long and complicated and due to Phil’s age he only receives the ESA benefit, he has not tried applying for anything else. You could maybe try the local Citizens Advice Bureau?

Megan

[meganjaneParticipant]

Hi Sarah,

I am glad to hear the DT Pace went smoothly but so sorry to hear M’s temperature spiked and he had to be admitted again. It sounds very scary and I do know what you mean about the parking. When Phil’s temperature spiked we got a cab to the hospital and I think the cab driver was terrified when he realised how unwell Phil was so he drove into the hospital through the ambulance only entry and dropped us off in the ambulance bay. I was lucky as we then just had to get out and leave him to it but I know quite a few security guards were unhappy with what he did. But what can you do? Phil would not have been able to walk from the visitors parking area.

We took Phil’s temperature three times a day while he was on treatment even when he was not neutropenic. It actually took quite a while after his stem cell transplant before we stopped checking his temperature at least once a day. Even now, if Phil feels even a little off I take his temperature just to be sure. We didn’t have anyone pop in to check on Phil but he had the phone numbers of numerous neighbours who he could call if he felt unwell while I was at work. It is hard going off to work and leaving them when you feel like you should be at home but you and M should discuss what will work best for you, if someone can pop in it may give you peace of mind until M is feeling a bit better.

The sunshine yesterday was lovely and it is set to be another lovely day today 🙂

Megan

[meganjaneParticipant]

Hi Angela,

Good luck to you and Alex for your run and thank you for helping to raise money for Myeloma UK. I hope the bone marrow biopsy on Tuesday brings good news.

Megan

[meganjaneParticipant]

Congratulations, definitely well deserved.

Megan

[meganjaneParticipant]

Sarah,

I hope you are both enjoying the long weekend and that the DTPACE helps get the Myeloma down to a level that will allow M to have the SCT.

Megan

[meganjaneParticipant]

Hello Helen,

Sorry to read about your relapse, I hope the next treatment has few side effects, works well and gives you a longer remission.

Megan

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