My Hodge Timeline

I thought I would use this page to post my Hodgkin’s time line so you can see how it all began and where we’re at now! Hoping this will help anyone who has come across my little blog whilst looking for info \ matching symptoms or wondering what it’s all about. Dates are as I remember them and not definitely the dates, this is just a rough guide to first line Hodge bashing!

September ’09

• Itching legs begins and worsens.
• Shoulder pain begins, attributed to bad posture using laptop and carrying amassive rucksack on a stupid hike!
• First GP appointments, various creams offered + pain relief and excercise for shoulder.

October ’09

• Itching worsens to point of broken skin in legs. The Hodgkin’s itch is obvious, its deep and unquenchable, I have scars all over from the scratching and nothing would stop it. If you don’t have it this bad, try not to worry.
• Starting to get tired during the day, attributed to no sleep due to itching.

November \ December ’09

• Try different creams and arrange blood test over itching. This revealed a very mild anemia and the GP decided to refer me to see a gastroenterologist as he thought I may have an ulcer!
• Shoulder pain whilst drinking alcohol begins to happen – Again, this is a very specific reaction to Hodgkin’s. In my experience I would have a very small sip of alcohol and this would cause a very strong pain in my shoulder. This would last for about 20 minutes and would then stop regardless of how much more alcohol I consumed. It wouldn’t get worse or better with more or less booze. It was not a heartburn or acidy reflux pain but like a muscle \ bone pain.

January \ February ’10

• Everything starts to get “Interesting” from here on in.
• The itching was getting so bad I went back to the GP and asked for a referral to a dermatologist who I saw privately to avoid waiting.
• Dermatologist found a swollen node in my neck – this had just come up – that reached the size of a large egg sticking right out.
• Dermatologist refered me to a Haematologist (treat Lymphoma in UK) for emergency appointment.
• Chest X-Ray reveals massive mediastinal mass.
• CT scan arranged to check for any other swollen nodes \ organ involvement
• Needle biopsy on neck shows inconclusive.
• Incisional biopsy performed on neck (local anaesthetic due to chest mass – no general – I was awake)
• Bone marrow biopsy performed (twice due to mess up)
• Hodgkin’s Lymphoma confirmed, stage IIA-xe  – Only nodes above diaphragm involved, no “B Symptoms” (Night sweats, fevers, weight loss), node found in lung but this is an extension of chest mass not evidence of systemic disease (the e). Bulky in chest (the x).
• Entered into RATHL trial due to stage etc. This requires PET\CT scan, Heart Echo, Pulmonary function test.
• Pleural and Pericardial effusions noted (caused by pressure from chest mass).
• These effusions caused breathing difficulty and a fast heart rate.

March \ April ’10

• Treatment finally begins.
• 2 cycles of ABVD over 2 months (4 infusions).
• A number of prophylactic pills are prescribed to go with your ABVD.
• Breathing improves dramatically after first treatment as shrinkage reduces pressure.
• Egg in neck begins to disappear in first few weeks, itching stops after first cycle (max) – phew.

May \ June ’10

• PET scan after 2 cycles ABVD reveals significant progress. Nodes in lung are gone, neck is pretty much gone (only residual) and half of chest mass is also residual.
• Scan also reveals effusions gone.
• Unfortunately part of chest mass is still showing significant uptake. because of trial this means switching Chemotherapy to BEACOPP regime (more intense).
• BEACOPP-14 begins.

July \ August ’10

• Complete first 4 Cycles BEACOPP-14.
• Hair finally falls out (all of it).
• PET after 4 cycles is treated as negative (see blog for details).
• Complete final 2 BEACOPP cycles.

September ’10

• PET at end of treatment shows same residual uptake in neck as previous 2 scans with a decrease in size (node now within normal limits), chest mass remission continues.
• Scan report is inconclusive, unlikely Lymphoma due to stable uptake and decreasing size but cannot be ruled out and so radiotherapy advised (neck only).

October ’10

• Gorgeous baby girl born, Emily Anna Ward is welcomed to the world.
• No chemo since 4th Aug, hair returns.
• Radiotherapy planned.

November ’10

• Radiotherapy planning \ mask molding happens.
• Radiotherapy commences, 15 days in a row.
• Radiotherapy completed, no worries.
• Back to work full-time.
• Follow up in Jan ’11.

March ’11

• Another PET scan reveals much the same as last time, stable uptake and decreasing size
• Dr believes unlikely to be Lymphoma
• Ultrasound guided needle aspiration to try to get testable sample (from neck)
• Ultrasound reveals continued shrinkage, node now 10mm

June ’11

• FNA was inconclusive
• Surgical consult for full biopsy – declined as too invasive (risk outweighs benefit)
• Repeat Ultrasound of neck shows stable appearance with continued decrease in size (now 8mm)
• Almost certainly now in remission!