Snow Monkeys, Japanese Alps

2002

• SYMPTOMS

• FATIGUE• SHINGLES• PLEURISY• BREATHLESS-

NESS• SINUS

INFECTIONS

• PERSUADE GP to BLOOD TEST

May 2003

• DIAGNOSIS

• CHLORAMBUCIL 1WK Cheltenham

• 12X PLASMAPHERESIS (NBT Bristol)

• 2Cd-A (Cladribine) 2 CYCLES(UCH)

• PARTIAL RESPONSE

• But: PERIPHERAL NEUROPATHY

• GASTRIC REFLUX• SINUS PROBLEMS

End 2005

• RELAPSE

• R-CH(O)P x 6 (UCH)

• GOOD PARTIAL RESPONSE

• REFUSED TRANSPLANT

• BEWARE OF STERIOD RAGES!

2010/11

• RELAPSE

• PICC line• R- ESHAP x 2

(UCH)• PICC line• AMBULATORY

CARE!• AUTOLOGOU

S BONE MARROW TRANSPLANT

Roger Brown- Salvage Patient age 61 ⅜

DATE 28-May 3-Jun 4-Jun 11-Jun 13-Jun 19-Jun 24-Jun 26-Jun 1-Jul 24-Jul 28-Jul 21-Aug 1-Sep 15-Sep 18-Sep 25-Sep 3-Oct 06-Oct 23-Oct 6-Nov 25-Nov 03-Dec

chelt bristol chelt chelt chelt chelt chelt uch bristol uch bristol bristol uch bristol chelt uch chelt uch uch uch chelt bristol

normHBC 13-17 11.3 12 12.9 12.6 11.3 11.7 11.2 11.8 12.2 11.4 12.1 11.8 13 13.1RBC 4.4-5.8 3.77 3.9 4.28 4.18 3.7 3.88 3.62 3.99 4.11 3.79 3.81 x 4.26WBC 3-10 6.8 6.2 12 7.5 8.4 5.9 5.9 5.4 1.88 3.4 3.8 2.13 3.4 3.04NEUT 2.0-7.5 3.2 2.9 7.9 4.4 5.6 3.2 2.75 2.61 0.32 1.5 1.82 0.66 x 1.51IGM 0.4-2.3 49.8 48 43.1 36.5 77 44 47.5 45 34 38 46.9VISC 1.5-1.8 5.4 5.7 3.74 3.81 3.92 4.16 4.19 3.8 3.6 4.21 4.6 3.4 4.4PLT 150-400 290 303 373 361 377 382 313 313 309 382 355 272 241 207

???Treatment pp1 chlr pp2 pp3 pp4 cdb1 pp5 cdb2 pp6 pp7

chlr= chlorambucil pp=plasmapheresis cd=cladribine x=missing or awaited

BLOODS

2003-Start of Treatment

2003 2005 2006 20110123456789

NeutrophilsIGM/10

BLOODS - CHANGE OVER TIME

Diagnosis

2Cd-A

startAfter 2C

d-A

R-C

HO

P

start

R-C

HO

P

end

R-ESH

AP

Start

95

% b

on

e m

arro

w in

filtra

tion

75%

BM

in

filtra

tion

AMBULATORY CARE REGIME*

* Day Care Ward then hotel in evenings on end of phone/bleep with wife unpaid keeper!

‘Time Spent in Reconnaissance is seldom wasted’ ASK Doctor- How many WM patients ?READ - IWMF leaflets, Websites, set Google alertSECOND OPINION- If at all unhappy- it’s your rightRECORD - all bloods, test, results, treatmentGO TO -Teaching hospital if possible-Travel is worth it.BE INVOLVED- IWMF ,WMUK, Talklist, UK Forum,

Seminars, UK Support group, IWMF ED FORUMALWAYS WORSE- For your carer or partnerCHALLENGE YOURSELF - Do things, go places

Erwin Rommel, North Africa 1941

PEARLS OF WISDOM?

Some Thoughts on Patient & Doctor Needs

1) The Knowledge Gap: Help newly diagnosed/frightened find specialists who see 6+ patients – ‘ improving the patient journey’. Likely teaching hospital-larger resources-latest treatment protocols –access clinical trials.

2) Keeping your options open: Ensuring first/ second line treatments do not prejudice - i.e alykylating agents/purine analogues such as Chlorambucil, 2Cd-A deplete stem cells for a future autologous bone marrow transplant.

3) Ensuring Resources for Doctors, Patients and Carers under new GP- driven commissioning regime- with demise of SHA’S, PCT’s and Cancer Networks. Patients need to be more knowledgeable/ask for experienced consultants. GPs need to know where the specialist WM clinics are.

4) Need to lobby for disease to be properly recognised- not just NHL or Myeloma sub set. Perhaps not as rare here as thought- 400+ new a year?

5) Need to align with Europe- European Medicines Agency has approved many drugs turned down by NICE- such as Bendamustine. UK Govt/NICE needs to be actively challenged.

• Doctors, Patients and Carers working together• Delivering major conference/seminar each year• Borrowing techniques from charities such as Myeloma UK• Charitable- Patients/Carers/Doctors/Nurses as Trustees• Shortening patient pathway to latest treatments• Encouraging UK trials and take up of trials• Working with UK support group(s) & UK Online Forum• Lobbying for resources for WM Treatment• Developing shared links/services with IWMF and European WM organisation• Active Website WMUK.ORG.UK from next month

INITIAL OBJECTIVES

Why not be involved?