Category Archives: Cellulitis

Last days in Orlando

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Friday 15th August

 I awake feeling so much better, and we decide to drive South West to Tampa, and Busch Gardens. I again hire a motorised mobility scooter, and begin our journey around the park. By the time we reach SheiKra the sky is darkening, lightning threatens, and the rides are closed ~ so, so disappointing! We spend quite a while moving around the park, looking at the various animals, but in the end we call it a day, give up, and begin the drive back to Orlando. I think last year, almost the same thing happened, it absolutely poured with rain as we arrived in Tampa, we didn’t even make it into the theme park, turned around and left! Never mind, the new ride Falcon’s Fury has yet to open ~ there’s always next year!

The weather improves upon our return to Orlando, and we go to look at some American classic cars and hot rods.

Our last day in Orlando is spent shopping and packing. We drive up to the Mall at Millennia and browse the shops in cool air-conditioned comfort. Again there is another spectacular afternoon thunderstorm to end the day and clear the air.

We pack and load up the car that evening, ready for a quick getaway tomorrow morning. It has been a different sort of holiday in Orlando this year, what with the thunderstorms and my cellulitis. Lots of activities having to be curtailed. Still, I think we made the most of it, visiting all the theme parks that we had planned upon, just not as frequently as we would have liked!

Fugly Cellulitis

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Friday 8th August

Today is hot, scorching actually, and we decide to get up early and drive South West to LegoLand. As the park had just opened, the queues were not too bad when we arrived. We made our way through the miniature cities and displays, and on to the water park; locating a huge parasol we parked our belongings and found the wave pool. It was gentle fun, a few hours spent idly reclining on the chairs, or building a Lego raft and drifting around the lazy river. As we leave, son decides he wants to go on one final ride, a rollercoaster, and husband and I wait in the shade. This is where I begin to feel really hot and uncomfortable, and eventually husband has to pour iced water down the back of my neck to cool me down. We arrive back at the car and the dashboard display shows 104℉, no wonder I’m overheating. I think I had a ‘heat episode’.

On Saturday we didn’t go to a theme park, deciding to have a much quieter day, and went shopping instead. Again I started to feel funny, fluctuating between feeling hot, shivering, and nauseous. We had to cut our trip short, drove back to the villa, and I went to bed. That evening I had noticed the top of my leg, underneath the support stocking, had begun to look a bit red and blotchy, but put it down to the excessive heat.

On Sunday we went to Universal Studios, hiring a motorised wheelchair with a sunshade on top. This was an absolute godsend as I was able to rest my leg. I could now move through the theme parks with much ease! We also loaded up the front basket with our bags and a cooler full of iced water. Another benefit was that on some rides I could jump the queue! It was a long day, just over six hours, but great fun was had by all

When we got home later that afternoon, the redness on my leg had become more intense and hot. I suspected cellulitis, so that night I began the two-week course of strong antibiotics that I had prescribed from my GP before leaving home, (thank goodness I had them with me). I also took pictures of my leg, and emailed my trials nurse.

Using my American cell phone I spoke with my trials nurse on Monday morning, and she had already spoken to my oncologist, who agreed that yes, it probably was cellulitis, take the antibiotics, and if the redness spreads, to seek medical help!!!

Overnight the redness had not spread. It’s just really bright, hot and sore, looking quite frightening and scary.

I spend Monday, Tuesday and Wednesday in bed, eating very little, but drinking copious amounts of water. I feel tired, but the sickness feeling and headaches, and the fever have gone.

This is crap.

I hate it.

I thought all was going to be ok.

I’m never bothered by hot weather.

I thought I was invincible.

How stupid am I?

Apparently having lymphoedema makes you more susceptible to getting cellulitis. But this is usually through a scratch or insect bite.

I have neither.

On Thursday it is our thirty second wedding anniversary, and I finally feel well enough to get up, get dressed, clean my teeth, have a shower, and try and look and feel almost normal again. Husband drives to Cocoa Beach, and we have a wonderful celebratory lunch overlooking the ocean.

A visit to my GP

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Wednesday 4th June

The day after my hospital visit, I have an appointment with my GP. I feel as if I have a shopping list of requests!

Firstly I ask if I’m eligible for free prescriptions ~ all those being treated for cancer should not have to pay for their medications. I’m given a form to fill out, and my lovely doctor agrees to countersign it as soon as I’ve filled in all my details.

Next, I ask if he will prescribe sunscreen for me. Having malignant melanoma, and possibly taking drugs that heighten my sun sensitivity, some doctors agree to issue this free of charge. My doctor has no hesitation, and I’m given a prescription for Factor 50 sunscreen for body, and a facial one too.

Another item on my shopping list is a prescription for strong antibiotics, two weeks worth, to take on holiday. I am becoming increasingly anxious about infections, perhaps leading to cellulitis. A scratch or stray mosquito bite could have serious consequences. Again, my doctor agrees to give me the tablets as a precautionary measure. I’ll take them with me, but only take them if absolutely necessary.

Finally, seeing as I’m on a roll here, I ask if I can have some of the moisturising, softening cream that the dermatologist had given to me. No problem at all.

Fantastic! I leave my appointment with everything I need, all for free. Such an understanding, caring doctor. He takes the time to explain and talk through my fears. A few less things to worry about

14 Days of Pills

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Tuesday 28th January

Day fourteen of taking the pills, and I’m not sure if they’re the real thing or the placebo. Dabrafenib and Trametinib, or simply harmless smarties? The Combi-Ad clinical trial has seen me give up many of my daily supplements, remember to time the taking of the tablets one hour before or two hours after food, and to question every little deviation from the norm in my body. I have to make a note of any changes, however small.

There haven’t been any temperature spikes (and I did go out and buy a digital thermometer especially!), and this was one of the side effects I was predominantly warned about. No joint pains, nausea, hair loss, rashes or sight problems. I do though feel more fatigued, and am constipated!!

Drugs or no? I just don’t know. I thought if I was to be taking the drugs, I would really, really notice the side effects. So, I have believed I’m on the placebo arm of the trial.

Before beginning the trial I think I’d hoped to be on the placebos: certainly no side effects, but all the intense monitoring. A couple of weeks in, and I’m starting to question that! Perhaps it would be more worthwhile if I was actually taking the real thing, and it was improving my survival chances.

Late on in the evening my trials nurse telephones to see how I’m getting on, any changes that I notice in my health, and to remind me of my appointments in two weeks (dermatology, Echo, eye exam, bloods, obs, consultant), she has it all organised! I tell her all is good, with no ‘temperature episodes’, and I find out that the five other patients on the drugs at Exeter have also not had these symptoms.

Ahhh, I had believed a high temperature was the main indicator of the trial drug. So might I actually be taking the real thing? Who knows? Not me, the nurse nor the oncologist. Only within a laboratory of GSK will my name be matched to the answer.

The Garment

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Tuesday 21st January

Support hose, surgical stocking, compression garment.

None of these titles convey anything but ‘old granny’, ‘saggy baggy’, ‘creased and crumpled’, ladies with fat ankles ~ ‘cankles’

Today is the day I’ve been dreading.

My new ‘American Tan’ stocking was pulled and stretched onto my left leg by the lymphoedema nurse, wearing a pair of blue washing-up gloves! She said these were good to get to grips with the tight fabric, in order to clothe my leg in this ghastly, knitted, tight, mud-coloured tube.

I’m not usually one for negativity, moaning, whining or crying, but the sight of my left leg, covered from toe to crotch in this horrendous material did make me sob.

Yes, I am vain, I admit it. I want to wear skirts and sandals in the spring; I like shorts and flip-flops in the summer; bare legs!

Well. I’ll just have to grin and bare it (ha ha!!). I’ll put up with this compression garment for a few months, and who knows, maybe the lymphatic fluid will be encouraged to drain away, up my leg, and find other lymph nodes and channels in which to disperse. I do hope so.

Lymphoedema and Support Stockings

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Friday 10th January

Well, that was the most un-positive day I’ve had for a long, long time.

I’m normally very upbeat and try not to let things get me down. Even if I’m feeling low, I try my hardest to put on a ‘happy mask’.

Today though it all seems very hopeless and a slide down towards despair and inevitability. Nothing is going to make this right, or better, or normal.

I rarely use the words don’t, can’t, won’t as far as my actions are concerned. But I don’t like this. I feel I can’t do this anymore. I won’t ever get back to being how I was.

My appointment with the lymphoedema nurse lasted an hour and a half. Many measurements were taken of both of my legs. Every four centimetres the circumference was measured and noted down. And yes, there were fairly large differences between the two. It turns out my left leg is carrying 800 mls more fluid than my right. Almost a kilogram in weight! No wonder the skin feels tight and stretched, no wonder my knee and thigh feel heavy and numb, no wonder I have trouble walking properly.

And what is the solution? A support stocking. There you have it. I will have to wear a tight garment on my left leg for the foreseeable future. This thought really does depress me, and the happy mask that I wear everyday, seems to slip away.

I leave the hospital feeling very low and despondent. I didn’t sign up for this!

Check up with the Macmillan nurse

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Monday 30th December

Today I have an appointment with the lovely Macmillan nurse in Truro. We talk for almost an hour. She checks the lump at the top of my leg, and is happy that it hasn’t become any worse. She says it is no longer infected nor cellulitic, but slowly repairing itself, the blood clots breaking down and being absorbed.

My actual scar is healing well, and looks neat and tidy. She says I should be pleased with this.

We talk further about what to look out for in the future: lumps, bumps and discoloration, mostly on or around the primary mole removal site on my foot, but I must also check my left leg quite scrupulously.

She wishes me well as I begin the medical tests later this week, and tells me to get in touch if I have any questions, queries, or just want a chat.

When I arrive home there is yet another appointment for me in Exeter! On Tuesday. With the Skin Lesion consultant. Mole mapping, (and removal ~ be prepared for a four and a half hour visit, if we have to cut out any nurglies ~ no the letter didn’t say that, but it may as well!!). So that makes trips to Exeter on Thursday, Friday, Monday and now Tuesday. Great planning!! Still, I knew I was going to be very, very closely monitored.

Three nurses’ telephone calls

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Wednesday 18th December

Yesterday we left Exeter and drove to Plymouth where we spent about four hours Christmas shopping. I took it slow, stopping for coffee breaks and lunch, but by the end of the day, my foot, ankle, calf, knee and thigh were incredibly swollen. Up until now, my only exercise has been bursts of about twenty minutes, going from the house, to the car, to the local supermarket, and then sitting in a coffee shop.

So on Wednesday I didn’t get out of bed. The swelling of my left limb was quite scary, and I didn’t want to risk any further problems. I lay there, with my leg elevated, and dozed for most of the day.

The first phone call I received was from one of the Macmillan nurses asking how I was doing, and whether I had made a decision on the Truro trial for Brim8 (vemurafenib). I apologetically declined, stating the very frequent monitoring, increased side effects, and the fact that all I had read made the Exeter trial, Combi-Ad, the more preferable. She was very understanding, and thought that would be my decision anyway. She also made an appointment for me to see the other Macmillan nurse after Christmas.

The second phone call I took was from the trials nurse in Truro; she wanted to know my decision. I felt a little bad declining their offer, but she too was most understanding.

Finally, I was called by the lymphoedema nurse at the local hospital in Hayle. We organised an appointment for later in January, where she would show me lymphatic drainage massage to control the swelling of my leg, and when she would take a lot of measurements of my leg, ready to have garments fitted. ‘Garments’???  Oh, those wonderful support stockings that guard against lymphoedema.

Well, anything that helps me return to some semblance of normality, I suppose I will have to accept. Trials, tests, monitoring, travelling, even support hose ~ if I value my life, I will do as the experts direct me.

I sign up!

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Monday 16th December

Just over two hours after leaving home, we are being seen by a lovely trials nurse at the hospital in Exeter.

Today is the day I sign my body over to GlaxoSmithKline.

We are taken to a very comfortable consulting room and the nurse goes through the different tests I will be put through before I get the go ahead to take part in this trial. A complete physical examination. These include CT scans, MRI scans, electrocardiogram, echocardiogram, vital signs, blood tests, eye exam and a pregnancy test!
I need to be ‘randomised’ before February 4th.

These are the details from the trial documentation:

“A Study of the BRAF Inhibitor Dabrafenib in Combination With the MEK Inhibitor Trametinib in the Adjuvant Treatment of High-risk BRAF V600 Mutation-positive Melanoma After Surgical Resection.

This is a two-arm, randomized, double-blind Phase III study of dabrafenib in combination with trametinib versus two placebos in the adjuvant treatment of melanoma after surgical resection. Patients with completely resected, histologically confirmed, BRAF V600E/K mutation-positive, high-risk [Stage IIIa (lymph node metastasis >1 mm), IIIb or IIIc] cutaneous melanoma will be screened for eligibility. Subjects will be randomized to receive either dabrafenib (150 milligram (mg) twice daily [BID]) and trametinib (2 mg once daily [QD]) combination therapy or two placebos for 12 months.

Primary aim: Relapse-free survival (RFS)
Secondary aim: Overall survival (OS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 5 years;
Distant metastasis-free survival (DMFS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Freedom from relapse (FFR) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Safety of dabrafenib and trametinib as a combination therapy in the overall study population; approximately 5 years.”

So, this is what I have signed up for.
It really is frightening and scary territory for me.
Having read a lot about this trial, and spoken (via the Internet), to people already on the trial, there seems to be a lot of hope and positivity for it.
Without help and advice from these people I would be walking a lonely minefield of ignorance

From the oncology waiting room, I then move along to the one at surgical outpatients. We have about a forty five minute wait, but are then called to one of the consulting rooms. It is almost five weeks since my plastic surgeon operated on me. The scar is incredibly neat, and healing well. However, I still have the drain bag attached, and my lumpy, red cellulitis is a pain in the neck! Apparently it’s all normal-ish . . . . the drain fluid is a straw colour, a good sign, but the hard, half-grapefruit-sized lump is an unwanted side effect. As I have no lymph nodes on the left hand side, lymphatic fluid has nowhere to drain, so it collects in pockets, and sometimes becomes infected, resulting in cellulitis. Oh joy! I must keep the bag stuck to my leg, and am given a new, two-week dose of broad-spectrum antibiotics.

My surgeon is great, and really easy to talk to about any problems or fears I may have. I am told the swelling will go down eventually, and cosmetically, I will have a very discreet, tidy scar. I am due to see him again in the New Year for a two month review.

Another day. Another trial.

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Thursday 12th December

Another long drive up to Exeter today, this time, to visit with a second oncologist to discuss a second drug trial in two days! Unlike the information from yesterday, this one combines two drugs: dabrafenib and trametinib, but alike, in that it is double-blind ~ drugs vs placebo, no-one knows if you are taking the drugs or not.

My appointment was for 3:45pm, but because of the horrendous parking situation, we rolled up with an hour to spare. Both of us are becoming quite good at sitting in waiting rooms! We finally went in about 4:10pm. Firstly we spoke to the trials nurse for about five minutes, then the Macmillan nurse for about ten minutes. She wanted to check my wound, drain and the extent of the infection and the cellulitis ~ it is normal apparently, following a groin dissection, but she did sympathise with me, and the pain and discomfort I was having.

Then they both left . . . and we waited and waited and waited . . . . . for almost an hour, my husband and I were in that room on our own!!!! Staring at the walls, opening the door, looking out of the window. The oncologist finally showed up about 5:20pm, apologised that a colleague had had a bicycle accident, resulting in broken bones, and that had messed up his schedule.

Hmmmm.

Anyway, we spoke for about 50 minutes about the trial ~ the drugs, possible side-effects, scans, tests, travelling to Exeter, emergencies, signing of the consent form, and interactions with my morning pill-popping of various vitamins, minerals and supplements

He said he would get the trial nurse to phone me to talk about all the pills I take, to make sure none are on the prohibited list ~ maybe turmeric, cinnamon and resveratrol, and then we’re good to go, to start the initial battery of tests, probably in the new year.

We did come away feeling quite positive, despite the loooooooong wait!!!!
We eventually exited the building at ten past six, arriving home about 8:30pm, in the end.

I believe my mind is made up, and I will go with the newer Combi-Ad trial, with slightly less side effects, and not as much scrutiny via relentless full body, invasive tests. Even if I get the placebo arm of the trial, I will be very well looked after, plus I won’t suffer the side effects ~ hmmm, sounds like a good plan to me!