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I HAD A LYMPHOMA/28
CONSULTATION WITH PROFESSOR LINCH.HIGH DOSE EXPLAINED
As advised over the Hubs 25/26/27 , yesterday we travelled to London to University College Hospital for a consultation on High Dose Chemotherapy and Stem Cell Transplant with Prof Linch who, along with Prof Goldstone who is soon to retire, is the leading authority on this treatment nationwide.
Prof Linch himself came to the waiting room to escort us to his consulting room. He is a very approachable man with an avuncular manner which makes him easy to talk to and this greatly impressed my wife who can be soon put off by medics with a less relaxed approach.As such she was encouraged to raise her own various queries during the 55 minutes we spent with the Professor.
He began by asking me to give him a full run down on events since what turned out to be my perforated bowel announced itself on July17 2010 whilst he made copious notes both of these and my Coeliac condition which may, or may not have caused it in some part but which it is now clear must be kept in check with a strict Gluten free diet to defer any further cancerous activity being encouraged. This is not to say that was the reason for the T-Cell Lymphoma but that by maintaining a gluten free diet that that factor is removed from the equation should future cancerous activity materialise.
Following this, the Professor gave me a quick examination to prove no obvious symptoms still existed by checking my abdomen and all key Lymph node areas. He agreed that my abdominal operation had left a very neat scar and, following my remarks that I was dissatisfied with my current lower energy levels and especially a tendency to become out of breath far too quickly since Christmas and Chops 6/8 and Intrathecals 2/4 decided to test this for himself. I was dispatched to walk down a corridor and to descend and then re-ascend 2 flights of stairs at a decent pace. By accident due to the stairs configuration I actually did 4 flights! Whilst I was away performing this the Prof engaged my wife as to the general nature of how I had reacted to the Chop etc and as to my general health, her being in best position to give a detached view which I have no doubt she gave in Technicolour!.
On my return the Prof took my pulse rate and after a short while did so again to measure my recovery rate which he subsequently described as very good, the initial reading being 108. That was too high for me but the Prof considered it fine given the treatment undergone at this stage of recovery from it, i.e 4 weeks from Chop and 2 weeks from Intrathecal. From the overview all looked good to go.
The Professor"s View.
Following this, the Professor then discussed the matter of the proposed treatment specific to myself. He explained from the outset that he would not normally entertain people of my age but the letter from Southend Hospital sent by the good Dr Islam, had shown an unusual response to the Chop in a most positive way. During this explanation ,for the first time I became aware that my recovery was in fact unusual and that the condition I had was much more serious and life threatening than I had even considered back at the start and early stages of treatment. This helped me understand the almost euphoric reaction to the team there to PET/CT Scan 2 revealing that the Lymphoma had been zapped. Seems I was even luckier than I thought!
Following that revelation, the Prof then clearly explained the nature of the treatment which was in line with Hubs 25/26/27 and endorsed the information provided by the British Leukaemia Charity. That done,he Professor underlined strongly that the final decision was mine and asked for our questions on the subject.
We had deliberately considered our own questions prior to the meeting independent to a great extent of the other, but it was encouraging to report that we focused on the same topics.Broadly our questions covered the following: 1. The % increase in chances of non-return of Caner activity after treatment. 2. The % chance of mortality due to treatment. 3. Estimated dates for treatment if decided to go ahead.The answers gave much pause for thought! 1. Non- return chances increased by 15%.2. Mortality risk 12/13%. 3.Treatment to commence in approximately 6 weeks.
To explain the above more fully the following was a revelation to us. The Professor advised that the increase in effecting non return was standard, but the mortality risk was increased from the 6% we had previously been told due to my age. New to us was the need to undergo treatment asap is due to the fact that each passing month clear LESSENS the risk of RETURN but of course, not MORTALITY! I am not naturally a betting man but odds of 13 to 15 seemed short enough, let alone 13 to 14/13/ 12 etc decreasing.This focused our discussion and I explained that listening to my body, it was telling me it needed a break from the severe treatment it has absorbed over the past 7 months,much less than to be subjugated to even greater intense treatment in the immediate future. Clearly this is a layman's view and no doubt he will deal further with this in his report to my own Hospital team. Finally, we asked the 64,000$ question! Namely if he were me would he go for High Dose Treatment etc. The Professor mused on this and replied that he probably would! Probably his most, perhaps only, unconvincing answer of the Consultation.
The Dilemma Goes On.
Thus, an excellent, learned and experienced man worthy of trust had answered our key questions honestly and fairly but not solved the dilemma to be faced.Probably more questions than answers resulting, but that is not to be critical, for if we do proceed, I shall be pleased to be in his care. The matter now moves on to next week and the visit to our team in Southend who will be by then in receipt of the Professor"s findings and that he would accept me despite age, as he considered me "strong" and thus has placed the ball firmly in my court.
Currently, both my wife and I have concerns and to say we are nowhere near coming to a decision is an understatement. We hope that we may learn more to assist us next week and my immediate concern is how many scans can be undergone. My last was in December, so it is possible it all could have started up again even now----- or not!. All very confusing especially as the treatment side effects from Chop and Intrathecal are now subsiding noticeably. This saga has more to run yet it seems!