Transplant time!

[starz]

Hello everyone from a long time lurker, but this is my 1st post. Thank you to all who have posted and given such helpful information and reassured me when I was trying to work out the best options with my husband.
Nick was diagnosed with CMML in Dec 08, started Vidaza in Sept 09 and had 7 cycles. He has just (30th June 2010) had a MUD RIC BMT at Kings in London.
All is going well, except the nausea and vomiting. He has been given anti emetic drugs, but I am now thinking he might have anticipatory nausea as it is the sights and smells that start it off.
Has anyone had any experience of this, and is there anything I can do that may help? Do those acupressure travel sickness bands work?
Starz

[squirrellypoo]

Hi Starz, and welcome!

It's nice to see another Londoner, and one at King's, too!! I had my transplant there almost exactly a year ago, and a RIC MUD, too! The nurses, doctors, and support staff at the DMU (and Davidson) are just utterly FANTASTIC. I cannot say enough good things about them. And the facilities there are really nice, too, with the new lcd tv/dvds and the nice wifi. The only bad thing was the food, but that wasn't the poor food service workers' fault (they were really nice).

If he's having problems with nausea, please, please speak to the nurses about it. They've seen everything, and have a solution for absolutely everything. They always told me to "never suffer in silence". I'd be wary of bringing anything in from outside without consulting with them first. Besides any interactions, everything you bring in could potentially have germs on it, too. My mom even opened up my post for me so I wouldn't touch the envelopes!

[starz]

Thanks Squirrelypoo,
Your story so far has been such a help, and especially being at Kings.
All my research so far has only come up with treatments that take too long to work for him, like hypnotism or CBT. They are going to give him a feeding tube so it may help break the cycle.
Starz

[squirrellypoo]

oh my name's Melissa if you'd rather call me that.

Feeding tubes aren't very nice, but neither is feeling nauseous all the time I suppose! Maybe this will give him the break he needs to get his strength back. Boredom was the biggest problem for me inside, so make sure he's got plenty to watch and do when he wants to, and maybe try to decorate his room so it's a bit less clinical. Page a day calendars are great because it gets you to a) realise what day it is! and b) it's something to do every day to mark the passage of time. Time just goes so slowly - visitors were definitely the highlight of my day!! And my morning shower was the other high point.

[Ruth Cuadra]

Welcome, starz.

It was definitely the case for me that sights and smells in the hospital would instantly make me nauseous. I don't think it is really "anticipatory". Although my room was not near the entrance, I could smell the arrival of the food carts and get sick before food got anywhere near me. The thought of food or a commercial on TV would do it too.

I agree with squirellypoo that you should ask for help for your husband's nausea. A feeding tube seems rather drastic at this stage. Has the doctor mentioned TPN (total parenteral nutrition)? With this method, liquid nutrition would be administered through his atrial catheter or PICC line in the same way he receives IV medications and transfusions.

Regards,
Ruth Cuadra

[starz]

Hello Ruth,
Thanks for those thoughts. He had an NG tube inserted yesterday, but managed to vomit that back just after taking a capsule. Most of the other meds have been changed for liquid or iv. I will keep that TPN in mind if he doesnt manage with the 2nd NG tube. He is naturally very fit but 'wiry' so hasnt got a lot of weight to lose. That is the only down side so far, the Unit is fantastic and the staff extremely good with lots of experience, and of course Prof Mufti and his team are the best.

Starz

[Birgitta-A]

Hi Starz,
Here is an article about nausea. As far as I understand Nick should ask for
a combination of (1) a 5-HT3 antagonist like Aloxi, (2) dexamethasone and (3) aprepitant (Emend).
http://www.cancernetwork.com/cancer-...0?pageNumber=1

If that isn't enough he could take metoclopramid (Primperan) and Temesta (a sedativum) too.

Then you have all these advices about small meals often, cold food without much smell, not giving him his favorite food because then he perhaps will hate that food for the rest of his life and so on.

Hope Nick will manage!
Kind regards
Birgitta-A

[starz]

Thanks Birgitta
I have just returned from visiting and I am pleased to report that he has not vomited today! Seems ages ago that he has had a day like that, and even better that he has eaten a small amount.At his request I went out and bought a cucumber to go with his sandwich! He also finds that a ginger and lemongrass cordial I have bought tastes good and ginger is well known for being a digestive aid.
Lets hope he keeps it up,
Starz

[starz]

One week after transplant and he is feeling much better. The pill crusher and oral meds have helped with the nausea etc. The docs are happy with his progress too. His neutrophils are back to .4 which was close to his usual level pre BMT, now they start GCSF so there will be a rapid increase I expect.
Starz

[squirrellypoo]

That's great news, starz! Yeah your counts jump up fast while you're on GCSF, so it's a bit of a letdown when you stop the shots and they fall down again. :P
Good to hear he's no longer so nauseous, either.

[Laura]

Glad to hear he is feeling better! Where is he having his transplant and for what?

Laura

[starz]

Laura
Dont know how to post the footer yet!
Nick has/had CMML and had azacytedine at Kings College Hospital in London UK, under Prof Mufti.

[Ruth Cuadra]

You can fill in your Forum Signature which is what those "footers" are called. The convention at Marrowforums is to use a signature that indicates your relationshp to the patient, the diagnosis, and perhaps the treatment(s) the patient has had or is currently receiving.

[starz]

Thanks Ruth,
Hopefully it will be there now!
Melissa,
Happy Happy Rebirthday! Take care on the run...its gonna be HOT.

[starz]

After a few days of 'badger tongue' where it was furry and white on the outside and black/brown down the centre, Nick has has a very sore throat and found swallowing difficult. His neutrophil counts have yoyo'd but with GCSF they are at a level where he is able to come out for because we are renting a flat about half a mile from the hospital.Its possible to go back if necessary, as they have held his room for the weekend.
He is really looking forward to his release!
Gem

[starz]

Nick came out on Saturday, and it was great to have him back! He was so looking forward to eating nice food again. Whilst some things he has always loved (avocados) were now unpleasant to him, he has eaten more food in a couple of days than in the last 3 weeks I think. He also managed the 14 lots of meds in the morning much better, not to mention the midday,evening and nighttime collection!
Todays clinic appt went well and blood levels were acceptable so back again on Weds for the next check. The only added med was magnesium, as Ciclosporin can deplete the levels.

[Ruth Cuadra]

Gem, it sounds like Nick is doing really well. It was ages before I was able to each much after my transplant and nothing tasted very good for a long time. There's nothing like being out of the hospital to help you feel better faster. Keep us posted on how he's doing. Following a patient who is doing well gives everyone a boost!

Regards,
Ruth

[starz]

Another good week where the blood counts have continued to creep upwards slowly. At least its the right direction! We popped back in today as I noticed a rash on his back. The doc thought folliculitis and not to worry but tomorrows main consultant appointment will probably tell us more.

[Laura]

Glad to hear the counts are doing well. Hopefully it is not GHVD!!!

Laura

[starz]

Bloods continue to improve slowly. We saw Dr Lim, the post transplant consultant, who was generally happy but thought it was minor GVHD on his back. So he had a skin biopsy in the dermatology dept this afternoon.
He may need to up the Ciclosporin.

[squirrellypoo]

Oh I really like Dr Lim, I used to see him loads! Skin GvH is nothing much to be worried about - the dermatologists are really great and hav tons of different ointments and creams that really keep it under control. And mine faded away to nothing after a few months so just keep after it as it flares up.

Has he met Michelle Kenyon yet? She's the post-transplant nurse specialist and she's utterly BRILLIANT. So, so helpful and approachable and super friendly. (Though I just saw her yesterday and she's off on holiday today so maybe you'll meet her when she gets back). She's also the one who wrote the excellent "7 Steps" Transplant book you probably got given, too...

[starz]

Thanks Melissa,
I think we were more worried than Dr Lim or Dr Liew the dermatologist. Nick now has Betnovate cream for the rash and has upped the Ciclosporin by 25mg per day. His levels were about 93, and they like it to be higher, but I cant remember if thats 100 or 150. Will ask tomorrow.

[squirrellypoo]

Ahh, good ol' Betnovate! That was my favourite of the various GvH ointments they gave me - it's gentler than the Elocon and way easier to use than the Epaderm (I only had skin GvH for a short while but it was on my arms, chest and scalps so I got a huge range of topical stuff because the body stuff doesn't work as well on the scalp!). I've got a different dermatologist, though - I ususally see Dr Rachel Morris-Jones.

I can't remember what any of my Ciclosporin levels were as I was only on it for 2 months post-transplant - I just remember my full dose was 125mg pills, and then we tapered down somewhat.

[starz]

Nicks Ciclosporin is now at 3X 25mg in the morning and 4x25mg at night. Probably a little early to tell from tomorrows blood tests if that will be the correct dose.

[Ruth Cuadra]

Gem, not to alarm you or contradict squirleypoo's experience, but skin GVHD can be a very difficult problem. You must be vigilant about reporting rashes, redness, or skin irritations that seem to come out of no where or develop over a couple of days. It's much better to control the problem before it gets out of hand than to assume it's nothing and wait for it to go away. Unfortunatley, I know several patients who were seriously affected by skin GVHD soon after their transplants and continue to be long afterwards. Just for balance, I should say that I never had any skin GVHD and was very grateful not to have to deal with it.

Regards,
Ruth