I got back to work Monday, it was good to be back and everything was in good shape.

Mel is doing well, if it weren’t for the baldness and the hickman scar there’s no way you’d think she’d had chemo less than a month ago.

She started her antibiotics on Sunday and will take them for six months.

Her MS symptoms have largely gone, she’s now moving her bowels normally without assistance, so much so that the daily ‘poo report’ has ceased - she’ll tell me if it comes back!

She’s tired but not MS tired, probably residual fatigue from low red count.

The tingly and numbness in her left arm and hand has gone. 

Mel went into her work the other day but ended up walking some distance between hospitals in 96 degree heat, there’s no way she could have done that a month ago, she’d have had to sleep for two days after that. At the end of the day she was tired but not exhausted.

We are trying to book the follow up with Dr. Kerr and are awaiting a call from the Copaxone people. 

I will update this as things happen, I’m a little uncomfortable with all the post-HiCy stuff, when I was writing about that it was mostly factual about the treatment, the hospital etc.

Now, I’m just trying to convey how Mel is doing and that is so much more subjective. It’s not so much with the external, physical symptoms, for example I could notice when she was walking weird, dragging her left leg before she could etc.

But now mostly only Mel will know what’s happening inside her head, is she cognitively better? How is she mentally? Depressed? Happier? Etc. I can translate what she says but a lot of it is intensely private, even from me. 

So, I’ll update as best I can and will still loiter around thisisms.com forum under the username ‘jamie’ (ingenious eh?) but the regular (!!!) posting will cease for now. 

The next factual info will be the 3 month follow up and MRI but things are going as well as we’d dared hope for and Mel is doing great.

There are some people about to start this, and some doing it right now, I wish you all luck and success and remember - it’s not as bad as you think it’s going to be and there’s no other treatment available now or even five years from now with the stunning success of this. It won’t work for everyone, but it’s worth a shot if you’re losing hope.

Oh, and Mel had her regular ‘cycle’ start today, so no chemo induced menopause it would seem. There may be some large headed children after all!

Take care,

Jamie.

P.S

Check out the upcoming site www.gothicy.com - it will be a site dedicated to HiCy not just for MS’ers but for all autoimmune disease.

Monday was the big day! We got to Hopkins at 7:45am. The Hickman was supposed to be removed in the other building initially but was moved to the Weinburg building which was handy.

Mel was taken away, given some Lidocaine and the catheter came out. Took about an hour, from start to finish.

We then went up to IPOP for Mel’s final weighing/vitals etc. The Nurse Practitioner, Janice, who was great the whole time, talked us through the discharge.

Mel will take an antibiotic for the next six months. She was supposed to take Bactrim but remembered at the last minute, under prompting from Janice, that’d she’d had a previous sulphur reaction so was given an alternative.

We were out of there by 09:30 and headed back to the apartment.

We’ll be heading home tomorrow and will arrive back Thursday night.

Things to report so far:

Mel’s MS fatigue has improved a lot. She’s still tired but it’s more an anemia thing and lack of activity. You MS’ers will know what I mean, the MS fatigue is just different.

Also, her bowel movements (sorry Mel) are a lot better, the first time in a year and a half she’s been able to go without the need for laxatives. Even during chemo she needed the laxatives! It was her first MS symptom and was always a good barometer of an upcoming attack, pooing got harder as the attack came.

Vision - no double vision for some time, that had been in remission for about a month prior to HiCy, let’s hope it stays that way.

Residuals- still weakness left side, numbness on hand. ‘Pulling’ sensation when looking hard left - muscle problem that developed over the past year.

All in all though things are great, best they’ve been in ages. Itching to get back home now and get back to work. I must take this opportunity to thank my employer and everyone back home covering for me, without your support this would have been a lot harder. Mel’s colleagues and employer too - they have been so supportive and flexible.

This’ll be the last post until the weekend when we are back home in sweaty, sticky Houston - I can’t wait I haven’t had a good steak in a month, it’s so bad my pants button up first go!

Thanks for all your comments, emails and messages.

There’s another thisisms regular going through the protocol now - Davis- I hope she’s doing well and I know there are a number of people soon to go to Baltimore. Mel stopped by her room on Sunday, she’d completed the chemo with no drama or vomiting.

Chris you must have a really weak stomach man!

The Johns Hopkins facitlity is first class with superb physicians and nursing staff - you genuinely could not be in better hands. Drs Kerr, Brodsky and the others really know their onions! The IPOP people are the best in the business.

And a friend of a friend of Mel’s mum’s college room mate’s Rabbi reckons Dr.Brodsky is the best in the world at what he does, so that was good enough for me!

See y’all in Houston,

Jamie.

Date   Hematocrit   WBC    Neutrophils   Platelets

4/22       37.1          5880        3670           314

4/24       36.8          9920        5840           338

4/25       34.2          7110        4740           271

4/26       32.4          5710        4580           249

4/28       35.1          2900        2480           196

4/29       32             2770        2580           174

5/1         33.9          1050          -                133

5/3         33.5          150            -                82

5/4         32.3          90              -                52

5/5         30.5          <50 (!!)      -              33

5/6         29.3          50              -                26

5/7         28.3          260            -                31

5/8         28.7          5810          5530          58

5/9         28.8          19370        14000       102

How’s that for a rebound?

They obviously stopped the growth hormone after the 5/8 results. The night of the last dose her large bones really ached then the numbers the next day showed why! 

Platelets are coming back

We attending HIPOP Thursday and Friday and have Saturday off. We’ll go Sunday just to get the counts done again.

Monday morning it’s back to Hopkins for the Hickman catheter to be removed! She’ll have some final blood work done and if all is well she’ll be discharged and we can go home!

There’s some confusion over whether we see Dr. Brodsky again on Monday, the coordinator says yes, the HIPOP don’t know and his office says no. I guess we’ll find out Monday.

The main issue now is boredom! I got caught up on a lot of work over the past few days which is good, she can probably go out and things but they’ve not officially told us so we’re carrying on with the mask/isolation etc. It’d be stupid to come all this way then get a last minute infection. 

Mel is itching (literally) to get her catheter out. The baldness is accelerating. She should ‘bic’ her head but won’t.

I think it’d look better that way than the patchiness she has now. It’s her head though so I’ll leave her to it!

We went to the image centre and bought some hats, sunblock and a scarf type thing that goes under a hat.

That’s about it really!

In other news after much soul searching, prevarication, self hatred for even thinking about it, I’ve decided to become a very, very, temporary Chelsea fan. Although like any right thinking person I despise them I honestly hate Manchester United more. It’s not been an easy decision.*

Also beard fans, I regret to inform you the scrawny, patchy, ginger beard passed away this afternoon.

It’s gone the way of Mel’s hair - the plug ‘ole.

Oh and Spanky has got an ear infection and he’s on steroids. Fortunately for us even high strength steriods can’t break through his natural sloth, if anything he’s lazier. 

He did give me a ride to the shops earlier though.

…………………………………………………………………………………………………………………………..

*the author reserves the right to change his mind if Chel$ki win the league tomorrow. A double for them would be unbearable. Having said that so would Manure winning the Champions League. God I hate football.

I didn’t think writing this would cause so much pressure! Seriously though it’s good to know that so many people are reading this, I hope it helps in some small way.

First, the blood:

Date   Hematocrit   WBC    Neutrophils   Platelets

4/22       37.1          5880        3670           314

4/24       36.8          9920        5840           338

4/25       34.2          7110        4740           271

4/26       32.4          5710        4580           249

4/28       35.1          2900        2480           196

4/29       32             2770        2580           174

5/1         33.9          1050          -                133

5/3         33.5          150            -                82

5/4         32.3          90              -                52

5/5         30.5          <50 (!!)      -                33

5/6         29.3          50              -                26

5/7         28.3          260            -                31

So, to explain it in terms even Vicki (my sister) can understand - mission accomplished. The lymphocites/neutrophils (the body’s attack cells) are gone, dead, kaput. As of today, her white blood cells are on the way back with (hopefully) a brand new immune system, not like that other immune system that was wrong, wrong, wrong.

More wrong than breast feeding a seven year old.

I know it’s only today’s results and the numbers can bounce around but it’s good that the platelets are coming back - very interested to see tomorrows results.

The main things to report from the past week are:

1) Hair loss. Mel’s started to come out 12 days after the start of the chemo, bang on schedule. Ladies, don’t get any false hope - your hair is coming out, get prepared. It will happen. Men - well, who cares really? No big deal to us.

After being in denial for a few days Mel’s nurse today told her in no uncertain terms to ‘go shave your head’. There is a place downstairs in the Weinberg Building that does free ‘buzz cuts’ but we’ve never managed to get in, apparently their ‘cosmetologist’ has left and they don’t have one. However there is a salon by the safeway and one of their stylists has experience of working with cancer kids so is very understanding, ask for Lorrie, she’s aces. Their number is 410 558 0047.

Mel’s annoyed ‘cos her head hair is coming out but leg hair very much remains.

2) Butt pain. Mel’s got an internal hemorrhoid as a result of the chemo. Painful. She’s been given some steroid/pain relief foam that seems to have helped, it’ll go of it’s own accord.

3) MS symptoms. Feeling good MS wise, no MS-fatigue (just anemia and her main goal of this was to get rid of that crippling symptom), no double vision. The constant tingling in her left hand is still there, and the muscle pulling on her left eye is still there but early, early days. The fatigue is excellent news though! As soon as she’s no longer anemic I expect her to be back to being a pain in the arse about ‘doing stuff’. Just kidding, can’t wait to be dragged around pointless things all weekend crying ‘can we go to the pub now?’ like an alcoholic four year old! Sure beats 48hrs of sleep every weekend.

4) The dog/car. Took ‘em both to get fixed. Car needed a new tyre, Spanky needed his arse glands squeezing. I dunno, between Spanky and Mel I’m spending a fortune on arse medicine.

Generally though the last week has been very calm and routine.

Our appointments are at HIPOP at 13:30 every day and it runs like clockwork. We arrive, she’s weighed, they take her blood and send it to the lab then inject her with the growth factor.

The growth factor is a sub-cutaneous injection and no big deal. Mel’s starting to get ‘aching bones’ today and that corresponds with the blood coming back and is totally normal. She’s got a bit of a headache too and I’ll be monitoring her tempertaure very carefully tonight and going forward. A neutropenic fever is not unusual especially around day 11 which today is. Fingers crossed that’s all that has happened.

She’s not needed any blood transfusions or platelets as yet, hopefully we can keep it that way.

So to sum up, all is well, this isn’t easy but it’s hasn’t been as hard as we thought it would be either. We’re lucky she’s young and generally healthy.

We bumped into someone from the thisisms website today! Hello Davis! Good luck tomorrow and keep us all posted. It was funny, she was a tiny woman in a wheelchair made for John Candy. The chair was so big it wouldn’t fit through the door.

They seemed very nice and Mr. Davis seems to know his onions about all this.

Carrie Trekker came to HIPOP yesterday to say hello, she’s good people.

They are going to monitor the blood through the weekend and perhaps we can go home the middle of next week. I’m worried about my lawn. Hopefully it’s been raining a bit in Houston. Man, I’m getting old.

I’m trying to persuade Mel to let me take a picture of her shaved head - I think she looks cute, she’s only got a tiny head so it works for her. Oh, and I’ve grown a beard. Not sure why.

Day 4 of HiCy

Ah, so this is what chemo is all about then?

The nausea struck finally, but didn’t actually make ol’ iron stomach throw up, she was dosed with two different medications for nausea, the second one Comapzine, is the one that really worked.

It was a day of her generally feeling crappy, no appetite, weakness and headaches.

Bloodwork came back, counts dropping as per protocol. All doses of chemo have been given and were tolerated as well as can be expected really, so proud of her.

Day 1 of IPOP

Or the day after chemo. Cyclophosphamide stays in the system for 48 hrs after the last infusion. Boy was Mel feeling it.

This was by far the worst day of the trip so far.

Mel woke up early, well got out of bed if she slept an hour all night I’d be surprised. She had a feeling of ‘antsyness’ couldn’t rest, get comfortable. I awoke to the sound of vomiting, it was a nostalgic sound that brought me back to my younger days of debauchery living with Steve. Ahh…good times.

Mel was throwing up after just taking her compazine. She decided to take another as she must have chucked the other one, this turned out to be a mistake.

The nausea didn’t go away and she hadn’t eaten for nearly two days when we got to IPOP. Mel was so weak she wanted me to push her in a wheel chair.

They have this cool thing at JHI where you have an electronic patient ID card and you just swipe it on the ground floor before going to the clinic. They then know you are on your way and you are registered, you can also pay for your co-pay and buy parking passes from the booth.

The ability to buy parking passes only works when the cash office is open, which seems kind of against the whole point of an automated system.

Anyway, I digress. The card didn’t work and told us to go to the registration room, we did and then I was roundly ignored for several minutes by the only person we’ve met so far at Hopkins who is consistently rude, impatient and just not very nice. Mel started to explain that we were to go to IPOP but the machine said come here, and after being ignored for a bit, the woman grunted at Mel and waved in the general direction of her left. I took over because it was difficult for Mel to talk through her mask and she was also choking back vomit. Oh and also because I was about to strangle this person.

Eventually her colleague next to her got involved, swiped our card and gave us the appointments for the day.

I got Mel up to IPOP as quickly as possible, her weakness had got worse and her neck was starting to twitch oddly.

At IPOP, Dr. Brodsky stopped by, he had a chat with us and I asked about the blood numbers at admission then the day after. (See numbers below). Normal apparently, the numbers will jump around but the overall trend will be down.

Mel couldn’t get comfortable and her neck twitching was spreading, they took some further blood as there was a concern her calcium levels could be low.

Things steadily got worse until Mel was having difficulty breathing, then I was ushered out of the room and the nurses took over.

Mel had a panic attack and couldn’t breathe, she was hyperventilated and they quickly had her breathing into a brown paper bag. I thought they only did that on 1950’s romantic romp’s starring Terry Thomas but there you go.

It turns out she’d had a reaction to the Compazine, like the chemo it builds up in your system. They calmed her down with Ativan and eventually things returned to normal.

We got home, I changed my underpants, and Mel managed to eat some PF Changs! Early night.

Day 2 - IPOP

After the excitement of the day before it was a very uneventful trip to IPOP.

Mel had awoken and the difference was amazing! Appetite back, colour in her cheeks. Nagging me to clean up the apartment.

By the time I had arisen there was a lengthy shopping list on the table for me, so off I toddled to Safeway.

When I got back Mel had cleaned the kitchen and generally tidied up and was hungry, the transformation just from the day before (and 48hrs almost exactly from the last chemo dose) was incredible.

MS wise she’s seen no real change, still muscle weakness in the left eye, weak and tight left side and and numb/tingly finger. Constipation still the same too. Blessedly she’s had no bladder issues with MS - something that always surprises Neuros for some reason!

Today her main symptom with MS which is fatigue had eased but shouldn’t read into that too much, it was just a good day - she had those too before.

At IPOP blood was taken, Mel’s Nurse Practitioner checker her over, and nicely asked me my opinion of her recovery too. It’s good when they involve you.

As soon as the counts came back we were free to go - here are the up to date counts - obvious downward trend:

Date   Hematocrit   WBC    Neutrophils   Platelets

4/22       37.1          5880        3670           314

4/24       36.8          9920        5840           338

4/25       34.2          7110        4740           271

4/26       32.4          5710        4580           249

4/28       35.1          2900        2480           196

4/29       32             2770        2580           174

Everything was fine, Mel was doing well so they gave us the next day off.

Which was doubly pleasing because the UEFA Champions League Semi Final (Second Leg) Chelsea v Liverpool was on.

Tuesday night Mel got the payback from doing too much earlier in the day. Her Hickman felt ‘weird’ and pulled and her muscles on that side were aching. She’d also developed a rash in the area and was itchy on her scalp.

She took some of her pain meds and eventually fell asleep.

Day 3 Post HiCy - Day Off

Mel’s itchiness continued, she called IPOP and she can take Benadryl, off I tootled to get it.

Nothing to report today Mel wise. Easy day, apart from itchiness controlled with benadryl and tiredness, all was well.

Liverpool lost, I got drunk. Glad we’re not playing Utd in the final.

Back to IPOP tomorrow, I’m going to ask them to change Mel’s dressing it looks all gunky.

So much so that we were wondering if it’s actually chemo those bio-hazard suited nurses are hooking up to her Hickman line.

Slight scare today in as much as her temperature went up to 37.5 from a base of a steady 37.1 - it resolved itself though and no-one (except me!) seemed to be too concerned. Celcius of course!

Mel was feeling good and in good spirits. Tired, but no nausea or pain.

Dose 3 of the HiCy came at 2pm which puts us on target for a 10am dose tomorrow which, fingers crossed, means she will be discharged from the hospital tomorrow evening.

Spanky will be v.happy.

With the chemo being done so early it meant I could go back to the apartment early at 9pm and get a decent nights sleep. I went to bed at ten and woke up at eight this morning.

Blood counts are dropping.

Oddly her counts at ‘baseline’ taken on Tuesday were significantly LOWER than the counts after the first chemo dose. I must ask Dr. Brodsky about that when I see him, if only for my own curiosity.

Blood counts:

Date   Hematocrit   WBC    Neutrophils   Platelets

4/22       37.1          5880        3670           314

4/24       36.8          9920        5840           338

4/25       34.2          7110        4740           271

4/26       32.4          5710        4580           249

So as you can see apart from the day zero anomaly the counts are decreasing as expected. It’s the WBC and neutrophil number that is the key, the neutrophil count will be at zero for 2-3 days before the ‘reboot’. They should rise slowly at first then exponentially after that.

Issues to be aware of (sorry in advance Mel….) - Constipation. One of the symptoms of Mel’s MS is her constipation, she stopped taking her regular regimen of laxatives etc as the chemo causes diarrhea, this was an error, even chemo is stronger than her iron bowels. It’s essential that you are very careful. Mel has a sore arse caused by constantly trying to go and any spotting of blood on the toilet tissue needs to be carefully monitored as once those platelets drop bleeding of any kind can’t be considered minor.

Fortunately she’s avoided bleeding. Sorry Mel, I’m telling this warts and all. Not that I’m suggesting she has any warts….!

Thanks for all the emails, comments, text messages and calls it means a lot, it can feel very isolating here at times.

And a big, special thanks to Michael Ballack and also the referee. That really cheered me up. If Ronaldinho is reading this….hat trick please on Tuesday. Thx.

For those of you who are interested in the brain physiology of MS, in particular the difference between black holes, T1 and T2 weighted lesions and what that means (it helps to make sense of your MRI) this article is really good, it helped me a lot when I first started trying to understand MS. Not that anyone truly understands multiple sclerosis but you know what I mean. Link: http://findarticles.com/p/articles/mi_m0850/is_4_20/ai_94040948

Also for people newly diagnosed reading this please have a read of this link, okay it’s from Bayer and I really don’t know where they got the 90% effective drug figure from (you’ll understand what I mean if you read it) but it’s one of the best ‘for dummies’ breakdowns of what is happening to your brain even when you feel good. http://www.mspathways.com/pdf/myth_of_mild_ms.pdf

My personal opinion, and I am about as far from being a doctor as it is possible to be whilst still being a human, is people with ANY enhancing lesions should consider this treatment, at least talk to your neuro about it, in the same way in cancer you wouldn’t say ‘oh it’s only a small tumour, I’ll wait to start treatment until I have a number of tumours’ any lesions is bad news, even in early stage RRMS as we can see by Mel’s MRI black holes can develop, and once that happens that part of your brain ain’t coming back. Brain plasticity is a wonderful thing but it is finite.

Anyway, that’s my update for today.

Cheers,

JK

Mel’s in relatively good spirits.

With the chemo you can bring it forward if you are tolerating it well by four hours every time. Her first dose was at 10pm on Thursday, todays was at 6pm and tomorrows will be at 2pm.

With a fair wind and good sailing she can have her fourth and final dose at 10am on Sunday which will potentially and only potentially mean she can leave the hospital on Sunday too. That would be great. A day early.

So far she has tolerated the chemotherapy as well as can be expected. She’s groggy and confused when it’s going in with some mild nausea (well controlled with meds, no vomitting yet) but then sleeps and is more perky after a few hours.

The first two days are supposed to be the easy days, it’s a cumulative effect apparently. Fingers crossed the next two days don’t hit too hard.

Her main concern is her stinkyness! She will be allowed a shower tomorrow.

I was at the hospital from 9-6 then 7-11:30, when I got back to the apartment the good news was the cable was finally switched on, the bad news was the door handle had been ‘fixed’ and locked me IN when I shut it behind me.

I only realised when I went to take Spanky out, he was on his leash running round me in excitment whilst I messed with the door handle. I stepped back and tripped over him nearly killing us both. Well, more likely him, I’d just’ve had to clean squashed pug off of my trousers.

After a 10 minutes of headbutting the door in rage the maintenance people came and released me, fortunately for him it was not the guy who had originally fixed the door who sprung me.

THEN taking Spanky across the five lane highway to the little strip of grass to do his business his slipped his collar and ran into traffic. My throat still hurts from shreiking at him to stop, fortunately he froze instantly and I could pick the fat little idiot up, that would have been great wouldn’t it - “hey love, how you feeling after you chemo? Oh, by the way i’ve brought Spanky in to see you, he’s in this tupperware bowl.”

Odd how these things get to you, over tired and a bit stressed my bottom lip was going when I couldn’t open the door.

Stupid really. I must phone back and apologise to bridgestreet (the lease company) for the way I spoke to them. When the woman answered the phone I asked her to put me straight onto whoever gets the ‘wanker’ calls. Because I most certainly was going to be a wanker. I’m not sure she understood the term wanker. She probably does now!

Mel’s blood counts are starting to drop which is the idea, more indepth update as to that later when I get the blood counts.

As an FYI to all of those unmarried couples coming to do this, your other half needs to get MEDICAL power of attorney or you won’t get any info. Fortunately I’ve got that for Mel, it’s helped. I’ve a template that I can email to anyone, all you need is two witnesses and a notary public. Email me at jamie.keogh@gmail.com if you want it.

Also whilst I think on, you won’t get internet access at the hosptial, I invested in a verizon wireless broadband card for my laptop and it’s been a real boon.

Sorry for the short post, I’ll do a proper more protocol biased post later on, the old thinking bean isn’t as razor sharp as usual right now!

Thanks to everyone for their well wishes.

JK

All options were discussed, the usual interferon choices, copaxone, tysabri and even FTY720 an oral drug with an approximate effectiveness of Tysabri. Melissa decided on the HiCy treatment after it became obvious that she wasn’t responding to interferon and in many ways the interferon made her feel as bad as the MS does.

Precisely because Melissa is young (32), fit, early in disease course (dx’d Aug ’07 – Rebif since Sept ’07) HiCy jumped out as the best option. This is the opposite of conventional wisdom that says if this is considered it should be a last resort.

Yes Mel wasn’t responding, yes she had some ‘black hole’ areas on her MRI and obviously enhancing lesions but her EDSS is ‘only 1.5’, my argument is it was zero 6 months ago. Should we be happy it’s ‘only’ a 3.0 by the summer, then ‘lucky’ it’s ‘only’ a 5.0 by Christmas?

If you mention HiCy to your neuro do not expect them to be informed about it, you have to be your own advocate, ask them to read the Hopkins research, especially ‘High Time For HiCy’ (google it).

Our neuro received the link but clearly didn’t read it. Or if he did he read it he did so through the filter of a made up mind. His email to Dr. Kerr that we were copied into was referring constantly to the pulsed dose of Cyclophosphamide, which is not the same and has been used as a last resort for people going downhill fast.

From first meeting with Dr.Kerr to insurance approval took 6 nerve wracking weeks. Pretty fast in medical terms but slow as molasses if you have MS, we had to keep reminding ourselves to get a bit of perspective.

The day to leave for Baltimore finally arrived, Mel had bought me a TomTom for Christmas, I entered the destination address and set off. Only 1548 miles to go.

In anyone’s terms that’s a long way but being English? If I attempted to drive 1548 miles in England it’d be a very wet drive as I plunged into the Atlantic Ocean!

I had first discovered HiCy/Revimmune online in late December. We were on a vacation of a lifetime in the Maldives, paradise on earth and I was sat in our luxury room googling for MS treatments whilst Melissa lay in bed gradually losing feeling in her hands and feet, sleeping 20 hrs per day. Not good times.

To be frank, I was scared to my bones and losing hope. I thought to myself ‘this will probably be the last nice holiday we go on’. Or certainly the last holiday that is a 22hr flight from Houston.

I stumbled upon HiCy and as a result www.thisisms.com and then www.chrishasms.com, as it happened my timing couldn’t have been better, a user on thisisms was describing his treatment (look for posts by the user name HiCy) and Chris Young from thisisms/chrishasms had just sent his details to Hopkins.

After driving through Texas, Louisiana, Alabama, Tennessee, Georgia, Virginia, Washington DC and finally Maryland we arrived at our apartment. I won’t go into too much detail about the drive but suffice to say it was long, uneventful and filled with McDonalds wrappers.

We left on the Saturday and arrived on the Monday, April 21st.

Monday afternoon was uneventful, got settled at the apartment etc, Tuesday things started for real.

Tuesday April 22nd

First trip to the Weinberg Building. This houses the Sidney Kimmel cancer center, the radiation facility and of course IPOP. This is where the majority of our time will be spent in Baltimore.

First to phlebotomy for a bucket load of blood work. 10 vials. If you do this treatment, get used to giving blood.

The next appointment was with the legendary Dr. Brodsky. I’d just like to say that this guy is so interesting to talk to and a top, top man.
Dr. Brodsky talked through the treatment, what to expect, what to do and what not to do. He explained it like this.

Four things could happen. Two of these WILL happen.

1) You will lose your hair. Not immediately, but you will, perhaps not 100% of it but you need to mentally prepare yourself for that. For all of those who wonder why your hair goes in chemo it’s essentially because chemotherapy goes after rapidly dividing cells, your hair follicle stops producing hair and eventually the existing hair is pushed out of the ‘socket’, this happens around two weeks after the chemo. This will happen in about two weeks.

2) Neutropenia. Kind of the whole point. To borrow a phrase from Fox News the ‘collateral damage’ is your red blood cells and platelets. The target is your white blood cells/lymphocytes. The purpose of this high dose course of chemo is to get your WBC counts down to zero and in doing so destroy the ‘attack’ T-Cells and ‘memory’ B-Cells that have erroneously learned to attack your myelin. This will happen and this is the ‘dangerous’ (although I prefer to think of it as ‘managed risk’) part.

You have essentially zero ability to fight infection on your own, you are without an effective immune system for a period of time. Fortunately in MS patients who have normal blood counts prior to treatment that period of down time is around 8-10 days which is why the post-chemo care is the differentiator for Hopkins/Accentia. The lack of red blood cells (the cells that carry oxygen around the body) causes fatigue and weakness. The lack of platelets reduces your body’s ability to clot blood. Most people will need blood transfusions during the treatment. Some don’t but most do. In the IPOP center you will receive daily prophylactic anti fungal, viral and biotics.

3) Nausea. Dr. Brodsky explained it like this. 10-15% of people get no nausea at all, 10-15% get severely affected, the rest are in the middle.

4) Diarrhea. Same as nausea really.

Infertility. For women this goes up in risk the older you are. For Melissa (32) there is a small risk of ovarian damage. A risk that she is willing to take.

Secondary malignancies, i.e. cancer caused by the chemo. Extremely slight risk for this one time treatment. This becomes a risk when cyclophosphamide is used over an extended period of time.

Some background on HiCy from Dr. Brodsky’s perspective. This has been used on Severe Aplastic Amenia patients for 30 years + with outstanding success. The life expectancy for SAA patients who have failed regular treatment back then was approximately one year. 30 years on people have normal blood counts.

(Side note, Dr. Brodsky just stepped in to check on Mel. He’s a nice guy.)

In fact and this is a direct quote from Dr. Brodsky - “I can confidently look SAA patients in the eye and say this treatment has a 70% chance of curing your SAA”.

If you know anything about SAA that is remarkable.

Even more encouragingly he thinks that the underlying mechanism and lymphocyte type of MS and SAA are similar so is hopeful that he will see similar or better results, the advantage MS patients have is that their stem cells are still there and unharmed unlike SAA patients who may have lost a high percentage of those cells.

They’ve had good results with Myasenthia Gravis but the disease returned in some patients. One example is a woman who was disease free for four years, the MG came back and she’s redone HiCy. Six months later there is again no discernable disease activity.

Which leads me to the new hot off the press treatment change, Chris has mentioned this on his blog but the method of action of Copaxone is thought to be a good way of ‘training’ the immune system once it’s reconstituted, in animal models (and let’s face it how many times have we heard that?) it’s been shown to direct the body to not respond to the ‘trigger’.

Still, it can’t hurt to take 6-12 months of Copaxone, best case MS never comes back, worst case? Well, nothing really, apart from the expense and inconvenience of daily injections. A minuscule price to pay if it works.

HiCy gives lupus patients only around 6 months of relief and has variable success with other autoimmune disease.

The reason for this is unknown but it is hypothesized that different diseases are responding to different lymphocytes some which are long lasting and aren’t killed by HiCy. As Dr. Brodsky called it – it’s a reboot not a reformat. Hopefully a reboot then an upgrade with copaxone will do the trick.

We went back to the apartment, got changed, then went to the James Joyce Irish pub to watch Liverpool v Chelsea and have some lunch. Last few days of freedom for Mel.

Two days to go.

Wednesday April 23rd

Arrived at Hopkins at 12pm for more bloodwork, patient registration, consent forms, meeting with IPOP nurse.

Bit of a messy day.

Turns out the bloodwork wasn’t needed and our 1pm appointment ended up being a 4pm appointment which put us late for our IPOP appointment. Frustrating but not really anyone’s ‘fault’.

Registration raised some issues apparently United Healthcare had only approved one day of inpatient care. Frantic phone calls later revealed that this is standard for UH. They approve daily, it was no big deal as it turned out but shocking at the time.

We met with Dr. Hesdorffer, another very interesting and knowledgable man, originally from South Africa he took nearly 40 mins to rub it in about the rugby last year which was decent of him! West Ham fan too, but apart from that he’s alright. He went through the protocol again, they certainly give you every opportunity to change your mind, and consent forms were signed. Admittance for Thursday was confirmed.

Dr. Hesdorffer and I talked about how we’ve been following the progress of other people online and I mentioned Chris. No patient doctor confidentiality was breached but Chris’s response to HiCy was considered pretty amazing, he arrived in a wheel chair and three weeks later could get up out of it for short periods, as we know from his blog this improvement is lasting and continuing.

EDSS scores going down? In MS? With HiCy this is the EXPECTATION now. Get it early and get it good.

Foods to avoid pre/post chemo: Any ‘thin skinned’ vegetables/fruits, i.e. an orange would be okay, an apple not so much. No uncooked vegetables.

Being English I like to use the ‘boiling the shit out of it’ method of cooking so no problem to the temporary chef. I.e. me.

Avoid people who are obviously ill. Avoid small children for the first month. No kissing or sleeping with your dog! (Several obvious jokes removed – Ed.)

Chemo stays in your body for 48 hrs after treatment, you urinate, defecate and perspire it out. If you have two bathrooms keep one for the chemo patient. Wash all clothes and linen separately, with bleach and twice.

This bit is in bold for a reason. Fever – do NOT fight it. Monitor your temperature carefully, for the purposes of HiCy a fever is considered 100.5. At that point you must call the IPOP number, if it is around day 10/11 of your treatment they are likely to tell you to take some Tylenol and monitor it carefully, as a fever is common once your stem cells come back online what you should not do is try and fight it until told to do so a fever is either natural or a sign of an infection, let them figure that out.

We met the IPOP nurse who gave us a binder of ‘do’s and don’ts’ and also some prep work for us to do.

They also gave us a list of things you can and can’t bring, I’ll post that in due course. For those people coming from out of town it would be handy to have prior to travelling to Baltimore!

The night before having your hickman inserted you need to thoroughly sterilise yourself. They gave us some antibacterial pads the procedure is as follows:

1) Shower, dress in clean pj’s.
2) Dab your arm with one of the pads, wait 15 mins to see if any allergic reaction occurs
3) If no reaction swab your entire body. Let dry, put on another set of pj’s.
4) Next morning DO NOT shower. Swab your body again. Put on clean clothes.

Here’s a helpful hint for the ladies that Mel learned the hard way. Do not, repeat, do NOT shave your legs prior to doing this. It will result in a painful itchy rash that hangs around for ages. Check your makeup, beauty regime and modesty at the door, you’re having chemo, you can look a mess. It’s allowed.

Thursday April 24th

HiCy-Day, and incidentally my Granddad’s birthday, he’s been going through a rough time in hospital too – happy birthday Granddad. I’m glad you’re still with us – I’ll see you in August hopefully.

We got up bright and early to head to the main hospital for Mel’s Hickman catheter/centre line to be placed. http://en.wikipedia.org/wiki/Hickman_line explains the ins and outs of this but essentially under sedation a line is inserted into your heart for infusion of the chemo and other drugs.

The procedure takes about an hour and Mel found the aftermath pretty painful and uncomfortable. Once it’s done though the other IV’s can be removed and everything is done through the two ‘sockets’ that dangle out of the chest.

Once that was complete we had to wait for her room to be ready, the sterilizing of the room takes up to two hours.

We were in the waiting room with a number of cancer patients that weren’t in very good shape, MS is a dreadful disease and I’m not trying to play ‘disease top trumps’ but sometimes it helps to get a bit of perspective.

Thursday was a long, long day. I eventually got back to the apartment at half past midnight, Spanky our dog had his legs crossed and has never been so glad to see me.

Mel started the chemotherapy at 10pm. Prior to that she was ultra-hydrated for two hours and had some other medicines, a sedative, anti nausea, a medicine to protect the lining of the bladder, and a saline drip.

Pretty much straight away she got a headache from the chemo, they gave her some oxycodone which helped after a while.

The nurse putting the IV cyclophosphamide togther had a fully white tox-suit on, pretty spooky.

She drifted in and out of sleep and about 15 mins after the chemo finished around midnight I left to release the hound and get some sleep, although sleep was a hard time coming, I must have checked my phone to make sure it was on and was set to ring not vibrate approximately twelve million times.

They do have visiting hours here 7am to 11pm but they aren’t strictly observed and I get the feeling if she was having a particularly bad time then I could stay.

All in all things are going well so far. We’ve had some apartment trouble and some car trouble but overall things are okay. The people here are superb, every single one of them.