Category Archives: Not as I pictured

Another change in diagnosis!!

Well the results of the second opinion by Dr Jaffe of NIH Maryland were back with my oncologist Dr Jason Tache today when my wife and I arrived for my first chemotherapy infusion. Dr Jaffe’s opinion is that the cells previously identified as +20 are actually -20, which meant that my oncologist, Dr Jason Tache, decided not to include the Rituxan in my personalised cocktail of chemotherapy drugs aimed at killing this cancer as quickly as possible. The diagnosis is now Lymphocite Rich Calssic Hodgkins Lymphoma, so I’ve gone from having a rare cancer to having the second most common – I suppose that’s good news – well probably. The less good news is that I’m now classed as stage 2B lymphoma rather than 2A. From what I’ve read and been told this isn’t really likely to make any difference to my treatment or recovery. The significance of the change of diagnosis to Lymphocite Rich Classic Hodgkins is that Rituxan wouldn’t make a proven improvement to the chemo cocktail but would have side effects, so, the logic goes, why impose potential side effects when there is unlikely to be any gain? This position means that Dr Tache could not, in conscience, use the insurer’s approval for eight treatments at a cost of around $8,000, and presumably thought that if he were to do the professional thing and notify the insurer of the change of diagnosis, then the insurer would cancel the authorisation. Do I trust Dr Tache’s diagnosis? Yes, absolutely, he strikes me as a very knowledgable and professional man. That level of trust was supported by the comment of one of the nurses that the doctors at this particular centre are world class. That’s certainly good enough for me!!

So, the chemotherapy itself went well. The nurse who worked with me was Lisa Doyle-Frank and I cannot commend her enough. She was friendly, supportive, professional, available and informative. Lisa was there the second that I showed any sign of needing her and very willing to leave paperwork to come and support me. Lisa was also really good at giving my wife information. Not to leave out the other nurses in the chemo room, I just don’t know their names – they were all very friendly to me and the other patients who pass through the room on their way to good health. There is a feeling of professional enthusiasm and good humour in the room which was tangible from the moment I walked in, and believe me, that atmosphere feels very good and is very, very reassuring. The relationships between patients and nursing staff were obviously excellent and I felt very secure.

Lisa approved of the quality of work performed by Dr Todd Schwartz, the interventional radiologist who implanted my “port” that comment was also very reassuring! After watching Not as I Pictured: Lymphoma and hearing the comments of John Kaplan about how painful the hook was as it was pushed through his skin and into his port, I was expecting the worst, but it wasn’t at all bad. Yes, I felt Lisa push it in, but I have to say I’ve had more discomfort from IVs pushed into a vein. Lisa started off by giving me a sedative just to relax me and boy did it work! All I wanted to do was sit back, close my eyes, and bring on the rest of the treatment! I wasn’t out of it by any means and I was able to join in the conversation when I wanted to, but I was very, very, very relaxed. After that came a test sample of bleomycin, just to make sure that there was no reaction. After the rest of the drugs were administered through the drip into port there had been no evident reaction and so Lisa gave me the rest of the bleomycin dose. After that we were done, a quick chat with Dr Tache to let him know that my wife had spoken with the insurer today and they had confirmed approval of the Rituxan should he at any time change his mind and decide it should be incorporated, and we were done. The advice from Dr Tache was to eat soup just in case I should suffer nausea. The advice of my wife’s pediatrican friend Henry, who has survived cancer himself, was that I should avoid eating my favourite soup! No, I don’t want to explain why he gave that particular advice!!! Anyway we decided that, before my immune system gets suppressed, we would have one last meal out so it was soup for me at Denny’s, and very enjoyable it was. During the “meal” I wasn’t sure whether or not I felt nauseous because of the chemo or because my stomach was empty after not having eaten for around 10 hours. Happily it turned out to be the latter and, so far, I’ve not been nauseous. Lisa thinks there is a good chance that I will not be nauseous at all and I want to believe Lisa is correct! Actually Lisa did say that it is often the second day after treatment that nausea hits but another lady in the chemo room said that it’s usually Saturday when she feels nauseous after a Tuesday infusion, so, I guess, it’s just a case of wait and see and hope the anti-nausea pills I have for the next three days will work and I won’t need to start using the back-up pills for the week afterwards.

Anyway it’s been a long day and midnight has just slid past while I write this, so I really ought to take the first of my pills, which may make me drowsy, and take myself of to bed – to dream perhaps!

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Filed under anti-nausea, Cancer, cancer stage, cancer staging, chemo, chemotherapy, Dr Elaine Jaffe, Dr Jason Tache, Dr Todd Schwartz, Dreams, Health Insurance, Hodgkins Lymphoma, John Kaplan, Lisa Doyle-Frank, Not as I pictured

I Will Get Rituxan

Today’s task was to track down the person who would be making a decision about whether or not I am to receive rituxan. It sounds a simple task doesn’t it? Mmmm I thought it would be too but, I’ve been wrong before and I’m sure I will be again. My first problem was in navigating the menu with Cygna. It seems my ID doesn’t include the last two digits, but, of course I didn’t know that so it took several attempts to get through to a real person. Eventually I was put through to one lady who clearly failed to grasp what I was telling her – a request for an off-list drug, rituxan has been made by my oncologist, it won’t show on your system because the request is, or at least was, being evaluated, so can you transfer me to the people who will be making that decision please? No, that’s no good apparently. It seems that the system works if I have a battery of numbers which the doctor’s office provides to Cygna and without which the lady to whom I was speaking couldn’t help me, though she did tell me she would try to connect me with someone who could and then put me on hold. When she hadn’t come back to me after around 20 minutes I did the obvious thing and rang off, after all, she had my phone number so she could call me back, right? Wrong! No return phone call. I then phoned the doctor’s office where Sheena was able to tell me that they still hadn’t had approval and the request was still with “clinical review”. These two words were clearly magical and could convey in an instant the department to which I needed to speak – eternal optimist me!

So, armed with the phrase, “clinical review”, I called Cygna back but this time took a different menu option and spoke with Tammy (Tammi?) who was really helpful, understood what I was saying, what I wanted, and set out to put me through to the person I needed. Really helpfully, Tammy kept coming back to me to let me know that she was still there and still trying to help. (The downside is that the beeps I kept hearing on the phone and which I thought were Tammy trying other phones turned out to be my stepdaughter calling, but I didn’t find that out for a few hours!) Eventually Tammy was able to transfer me to Brandy who grasped things really quickly, knew that she wasn’t the correct person for me to speak to as I needed the “injectible department” (I kid you not), and transferred me to Angelina who was the correct person to talk to and who was able to resolve things for me very quickly by liaising with someone and asking me a couple of simple questions i.e. is this a new treatment or a continuation and is the treatment at a hospital or the doctor’s office? Such simple questions that you might have thought the paperwork would have covered them, but, clearly not. Anyway, armed with my two answers, Angelina was able to complete the liaison and came back after only a few minutes to tell me that the request had been approved for eight treatments and confirmation would be faxed to my doctor for me for Monday. Like my wife, I can’t help but wonder whether this would have happened had I not phoned. Anyway, thank you, Tammy, Brandy and Angelina – you really were very friendly and helpful.

That apart things seem to be going ok. I’ve had a couple of nights of good sleep without the night sweats and I feel much less tired which is great.

Last night my wife and I watched a documentary “Not as I Pictured: Lymphoma” a film by John Kaplan who is an award winning photographer. The film tells the story of John’s own journey and is very, very involving. There were quite a few things in it which struck home to me, but one of them jumped out today when I accidentally touched “my triangular lump” which John said he was reluctant to do. I think I can understand why – it just doesn’t feel natural! Well, obviously, you might think, but the skin just doesn’t feel natural over it either. The other things he said about the port were that although the doctor gives some cream to numb it there is still pain when what he described as “a meat hook” is pushed through the skin and into the port. Mmmm, now there’s something for me to look forward to on Tuesday!

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Filed under Cancer, chemotherapy, Health Insurance, Hodgkins Lymphoma, John Kaplan, Not as I pictured