Monday saw me making my way to New Cross Hospital for the first of this week’s appointments. Armed with my appointment letter and a bottle of human pop I waited in the reception queue to be called.”Michael Gormley” called the health care assistant. I got up and walked over to her and she said: “you’re looking well this morning”, so I started to limp. I limped down the corridor to Dr. M’s clinic and took a seat, holding out my bottle of “Pop”. HCA :”I know it says we need it on your letter, but it is a standard letter and we don’t actually need it, but thank you for making the effort”. Where to put it now….. in my pocket it went with a prayer that the lid might be tight.Dr. M introduced himself as one of Dr. B’s team…..AAAAAAH….NOW I know why I’m here…… the Gastro-intestinal man has asked Dr.M to consult with me. What a pleasant man Dr.M is, explaining why I needed to see him. I had complained that I have a regular urgency that makes me run back home from bus stops, turn the car around and rush back home mid journey and to trek the landing in the middle of
Back to school for The Girl next week.We have her brother and His Girl staying with us for a few more days before they go back to their University town for Year Two.The Boy has fond memories of bonfires at the treehouse, so the other night he pitched the tent and he and His Girl spent the night up at “the Rough Grazing”.Sausages were cooked. A guitar was played. They chilled out. By 5am they were so chilled by the rain that they came back to he house to thaw out!FL has asked me to say thank you, on his behalf, to everyone who has commented on the latest Health Update.”Thank You!”It hasn’t sunk in. He received the news with the same incredulity that my daughter greeted her Credit for Standard Grade maths! (Woo hoo!)He can’t accept that he can be improving if he still feels so exhausted all the time.
Appointment time: 10.30am
Seen by Doctor: 12.30pm
Given Zometa Infusion: 1.20pm
Drugs delivered from pharmacy: 3.20pm
Knitted cuff of Betty Jean sleeve 2
Finished “The Distance Between Us” by Maggie O’Farrell (it’s OK, but not as good as “The Hand That First Held Mine)”
Embroidered Dream Garden cushion top
FL read… and read… and read.
We saw The Big Female Cheese, which always feels like such a relief and just doesn’t happen often enough. I trust this lady. She can be a bit, um, assertive at times, but I suppose that is why she is such a Big Cheese.
So she asked FL all the questions that ought to be asked about how he has been feeling (makes a change, eh?!) and explained that he would be prescribed Revlimid again, and for the foreseeable future, because of the continuing improvement in his Myeloma.
Hang on a minute – what did she just say?
We may have stared at her in disbelief. I may have developed a cut-glass clipped English accent as I asked her to tell me exactly what FL’s Kappa score was, because we had understood that his condition was getting worse and not better…? She fixed me with a very serious gaze and asked what number I had been watching. “His Kappa score, and we were told it was rising.”
Ah – but was it his “derived Kappa score”? Doctor, I have no idea. I asked your colleague for his Kappa Score and she told me a number and that it was higher than the previous month’s number, which was a Bad Thing.
And here is what The Big Female Cheese said: “Ah well, I and many of my colleagues prefer to use the “derived Kappa score” as an indicator of progression, because it is much more accurate. In this case, FL’s latest derived score is 251.4 which is considerably lower than the 495.7 of February, and he is therefore improving.”
She then went on to say that “some patients stay on Revlimid for two years with no problems”, which is the nearest thing we have ever heard to positive talk from any of these Doctors in, oh, at least two years. She didn’t say “You have just won the lottery and everything is going to be fine” but she DID say “There is no need to send FL’s blood to Birmingham”. Which kind of suggests she thinks we have turned a corner, I think? Does it? Oh who knows!
And his haemoglobin is “the best it has been for a long time” at 114.
So we are … relieved? Confused? And extremely angry about the misinterpretation of the numbers by her junior colleague last month and the month before. We have spent the last two months telling friends and family that things are going downhill, and that maybe by Christmas FL would be in serious Myeloma trouble. Which is NOT a fact. It is not even a rumour.
Today, we were offered a feedback form by the Receptionist. We filled it in. We did not mince our words on the need to supervise Junior Doctors and ensure that they check with senior colleagues if they aren’t sure about the answer to a question.
Because this is somebody’s life they are making guesses about, and the emotional effect has been significant. FL has been “taking it easy” for the last two months in the belief that he was on the way out. He has only golfed twice in the past month and he has spent most of his days asleep and most of his nights awake. He was completely convinced that today he would be told he couldn’t have any more Revlimid because he was too ill. So, this is going to take some getting used to.
8pm Tuesday evening: where is he now? At the pub with his pals. Do you blame him?!
I wanted to share this link with my readers, because it’s an important discussion about cure vs control and other aspects of myeloma treatment or management. http://margaret.healthblogs.org/2011/08/02/the-cure-versus-control-debate-a-new-blood-study/ Please read it and let me know what you think. I’ve long thought I probably should have held off on treatment for as long as possible, and my …
Hi, just a quick note to say the meds have put me into remission now – about 3 months now. Hoping it will last! I still have to keep taking the pills, but we are experimenting with cutting the steroids which give me grief. I will write more soon to maybe say more on how the treatment is going, for the benefit of other myeloma patients. Hope you all have a good summer!
From patientpower.info. Dr. Berenson talks about Zometa, Vitamin D, Calcium, Stem Cell Transplant and other treatments for multiple myeloma. Myeloma Update from ASCO from Patient Power® on Vimeo.
Thank you to Sandy for her comment on my last post. As my post occurred on a holiday (in the States) weekend, I forget that people might not see my blog till later in the week or it might get crushed with all the other updates people get. So to Sandy’s point, a little more color, but first, apologies for the reiteration, but here’s the details I posted previously.
(repeat from prior post – new information below)
My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She’s 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She’s scheduled to get TC in four cycles (I believe). But she’s scared of the chemotherapy and not thinking of what could happen if she didn’t get the chemo. On a scale of 1-50 she’s a score of 23, so about halfway. She has cancelled one appointment and I’ve not yet heard if she’s gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a “speedy” night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.
Now this blog has been mostly about MM but being scared of chemo knows no borders – just some chemo is more of an annoyance than others. What I’m looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.
Sandy brought up a point that my cousin may be in denial (most definitely) while also being scared of the drugs, their effect, etc. She can’t take tylenol/codeine without feeling like she’s on a 70’s acid trip. But again, I think that’s being more scared than anything else. Regarding Sandy’s comment about getting online and taking control – well that’s a bit of a problem as, until 2 weeks ago, she didn’t have an email address. She’s sent me one email (the night the Dex hit her!) and she’s not yet responded – most likely due to the fact she doesn’t know how! She does have a son and daughter that can assist with email but I need to call her to get her more info. Regarding family, her sister is a nurse (oncology I believe) so she has resources but she follows the clan with her stubbornness! At some point she’ll read this and probably hate me but I’m hoping the information I get from my blog readers is such that she’ll thank me in the long run!
If you have any feedback (Sandy, thanks for the start) I’d much appreciate it. Please leave a comment and let me know. Again, thanks for reading!
Bonjour to all of you out in Myelomaville! That means ‘hello!’ to my friends down at the 5 & Dime.
Thanks to the dedicated folks at the International Myeloma Foundation, you can watch an exciting, hopeful, helpful internet video presentation from the 2011 International Myeloma Workshop meetings taking place in Paris this week. C’est magnifique!
This presentation addresses some of the ‘novel
This is from the AP. Other reports mentioned only “complications,” which we now know to be pneumonia. It’s very common for myeloma patients to develop pneumonia.
Ferraro died at Massachusetts General Hospital, where she had gone Monday for a procedure to relieve back pain caused by a fracture. Such fractures are common in people with her type of blood cancer, multiple myeloma, because of the thinning of their bones, said Dr. Noopur Raje, the Mass General doctor who treated her.
Ferraro, however, developed pneumonia, which made it impossible to perform the procedure, and it soon became clear she didn’t have long to live, Raje said. Since she was too ill to return to New York, her family went to Boston.
Raje said it seemed Ferraro held out until her husband and three children arrived. They were all at her bedside when she passed, she said.
“Gerry actually waited for all of them to come, which I think was incredible,” said Raje, director of the meyloma program at the hospital’s cancer center. “They were all able to say their goodbyes to Mom.”
Firstly many thanks to those who have left comments and sorry I didn’t respond individually – it has been one of those weeks! It is good to know the blog can be useful.
Well I’d hoped that I’d be feeling a lot better by now, but despite the last scab falling off the rash is still very painful – it looks raw in places where the scabs came off and the whole area is tender and prickly. Not only that but almost since the start I have had very weird electric shock type nerve contractions centre/side back mostly when lying down on my right and sometimes left side. I end up having to sleep slightly propped up or flat on my back, which I hate. I’m hoping that this will gradually go, as I know that you can be left with this sort of thing for months.
In the meantime I have continued with the imipramine – no idea whether it is doing anything – and am trying Vaseline on the rash. Also I have been put on a low daily dose of aciclovir to prevent me getting another bout of shingles – what a thought!
I did get an extra week off my treatment, and restarted last Tuesday. The good news was that another test showed my light chains down again! Of course the side-effects are making me a bit down – by Sat I’m usually pretty grotty – but I’m taking it very easy!
Despite it all I have actually tried to keep busy – stacks of anti-cuts work via emails have taken up a lot of time. I have also tried to do some physical activity every day, even if it is housework!
Well – not much other news. I see from emails I get from the International MM Federation that there are lots of new drugs and regimes being tested, so hopefully as time goes by, MM will become much more of a chronic condition.
I hope you all have a good Xmas and I’ll write again soon.