[valgrebezsParticipant]

Hi, sorry to post again but I had no replies from my posting 2 weeks ago. So will try again.
My husband has to have extended Chemo when he should really be finished in 2 weeks time. They say his body is quite resistant to Chemo! not heard that one before! We were all ready to make plans for SCT so quite shocked. He has also had Radiotherapy, 5 sessions in quick sucession. Any ideas?
2nd question please……….I want him moved to the Royal Marsden in Sutton but Consultant was pushing for UCL. That’s too far away and inconvenient for us. So, I have phoned the Marsden and want to e-mail his Consultant…..will he be offended and think we feel he’s no good? That’s my British Airways side coming out…want to push but also be nice and polite. Would be grateful for any comments and could we change hospitals during Chemo or have to wait until it’s finished, eventually.

[duskParticipant]

Dear Val

Sorry no one responded to you and that you are unhappy with the information / treatment from current consultant.

Have you asked questions of the consultant as to what he means by ‘body is quite resistent to chemo…’ I assum he is talking about paraprotein / free light chains not going down much, but you need to ask. How many chemo sessions were originally scheduled?  Not evrryone has 6 or less sessions before SCT, the decision is made on whether a further MM reduction can be made by extending the treatment, or for other clinical reasons to delay SCT. You need to ask more questions to understand your consultant’s approach to treatng your husband.

No consultant of worth would be offended by your wish for second opinion.  It takes a little time to get an appointment at a new place and they will want all the previous clinical information to assess your husband. I would insist with your consultant he requests the Royal Marsden and explain your choice- your reason is valid. If you nhave a supportive GP the GP can also make a second opinion referral if the consultant insists on UCL.

I think, but cannot be certain, that most clinicians would see your husband after he has completed a course of treatment, so they can assess the results themselves and you can ask about what further options are possible and why they would be of benefit to your husband in particular.

Good Luck.

Good luck

 

[mattkboParticipant]

Hi Val,

Also sorry you did not get a response first time. I agree with Dusk you need to understand what that statement means, you could phone the nurses for this site and maybe discuss what information you should be recieving or what questions you could ask so that you understand, the nurses have a great reputation. The most important thing is that your husband gets the best care, at a facility that he and you feel comfortable in and that is easy to get to. (I currently have a 2 hr London traffic drive for my hospital). I don’t think your consultant’s feelings are important if you feel you can get better and more convenient care elsewhere. I’m sure you’ll be polite.

Good luck with it all.

Matt

[finnParticipant]

Hi

Do you mean that your husband’s paraproteins are not coming down as quickly as expected? That is quite common. I had 6 cycles of Velcade, Dex, and Cyclo that only halved the level of my PPs, after which I had 6 cycles Revlimid and Dex. Finally the PP levels were low enough  (PP 5) and I was ready for SCT after a year of continuous therapy. Hope it all works out for your husband.

[valgrebezsParticipant]

Hello and thank you so much for your replies. Mrs ‘Zombie’here as had no sleep last night as husband was in agony.So ‘Zombie’ I am today.Just for info, he has a lump on his back wich has reduced, but not enough. Consultant doesn’t talk much about paraprotein levels and I have taken
the advice of all of you. Written letters to Consultant which Peter will deliver tomorrow when he has Chemo. Today, wanted to e-mail Consultant, but telephone operators didn’t know who he was!!!!!! and no e-mail address!!!!! That’s what wrong with the NHS, no communication. I called 111 very early this morning and eventually a lovely Doctor arrived, Peter thinks he has Sciatica but I have a feeling it’s Neuropathy. But to cheer you all up, his friend, a GP has this and has just bought a Porche. There’s hope there.
and now he’s sleeping. Unfortunately, I have to go away on Wednesday and won’t be back until 26 March
but a close friend will stay and be with him. Thank you all so much, what would I do without this site.
Val xx

[bandityogaParticipant]

Val

I would request an MRI scan for the lump in hubby’s back. My hubby had a lump on his back which was spinal compression. The radiotherapy will reduce any spinal tumour. He is now going for SCT although his FLC are 680. If you aren’t happy with your consultant, get a second opinion. Ian would not have been put forward for SCT if we had not changed consultant.

Maureen x

[andygParticipant]

Hi Val.

When I was diagnosed I was told six cycles of chemo, CDT, then SCT. Well I’m still on chemo and SCT has just been ruled out again! Oh I was diagnosed October 2011 that’s three and a half years of chemo.

Everyone’s journey with this disease is different never count on anything going to plan.

As far as I know it’s up to you where your treated and your GP should help you there though the final say will be down to the consultant/hospital you wish to be treated by. Good luck.

Every day is a gift.

Andy xx

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