Stumbling through the dark

AHSCT

The medical information is correct. This treatment  has been under trial since 2010/11  and is being used in the UK and the USA. 

"Niall, it's good to see you. How have you been keeping?" Paul Taylor smiled at his young patient as he waved him to a chair. "And you too, Liam" he addressed  the bearded young man who had accompanied Niall to his appointment. "Take a seat gentlemen and make yourselves comfortable. We're just waiting for Louis to join us"

"Lou's here?" Niall asked excitedly.

"He'll be joining us on Skype, Niall. Unfortunately he is unable to physically be with us. He does, however, very much wish to support you  which ever  route you decide." The Neurologist was interrupted by the beeping tone that announced that Louis was now on the screen. "Ah, Louis. We are glad to have you with us.

"Hi Niall, Li, Paul" Louis chirped  and got answering hellos from the boys.

Paul sat himself behind his desk and angled the screen so that Louis could see them all and they could all see Louis. Paul cleared his throat "Now, before I start to explain the what the treatment will involve, please feel free to ask as many questions as you like,  either as we go along or at the end, whichever you prefer. Niall, there will be a lot of information for you to absorb so I am sure having Louis and Liam with you will help. Now then gentlemen, if you are all ready, I shall explain the treatment, what it entails and its possible outcome.

As you are aware, MS is caused by the immune system becoming faulty which leads it to attack the body instead of acting as a defence system. For the last five years or so, there have been trials that have been using the patients own stem cells to reboot the immune system and take it back to the pre-MS state.As I said, this is still a trial treatment and whilst it has proven to given promising results, it is not without drawbacks and we still do not know if the treatment is 100% effective and/or if the results are permanent. It is also very expensive. Are you all with me so far?"  Paul asked and got confirming nods from everyone.

Now, in order to reboot the immune system, we actually have to destroy it." Paul continued " This is done by aggressive chemotherapy  at very high doses. First we have to collect the stem cells from the patient. This is done over a few weeks. This is then stored while Chemo is carried out. Then the patient receives their own stem cells back via an IV  system which will reboot the immune system back to healthy. The procedure is called Autologous Haematopietic Stem Cell Transplantation, AHSCT for short. Everyone still with me?" Paul queried, looking at the men around him. "Niall?"

"I think so" Niall said with a small frown " 

"Any questions?" Paul wanted to know.

"The chemo" Liam said " you said it would be very aggressive, high dose. Why?"

"The immune system has to be completely destroyed otherwise the stem cell transplant will not be effective. It would be done every one to two weeks f until 10 treatments have been completed. The timing would ultimately be down to the Consultant Oncologist, Mr Peters.  As the treatment will be particularly aggressive, there will also be increased side effects and also more risks in withstanding the treatment. This is why I want you to know everything. You may decide it isn't worth it.

"OK, side effects and risks" Liam wanted to know, glancing at Niall who was white and shaking. Liam reached out his hand and gently rubbed Niall's shoulder.

"The side effects of the chemo can vary from person to person. It's possible to get all the side effects, some or even none. There is no real answer. Nausea, vomiting, diarrhoea, bruising, sore mouth, bleeding gums, persistent cough. pain, itching, infertility , hair loss are the main ones. Most of these can be managed with medication." Paul listed off the general things that could be expected.

"Infertility" Niall whispered. He wanted his own children, what if it couldn't happen. He rubbed his hand over his face, jumping slightly when Louis spoke

"Paul, is that a definite? Is there a way to prevent it?"

"Some men manage to come through it but it is less likely with the higher chemo dose. The Oncologist usually recommend collecting sperm samples and storing them so that the patient can have children after treatment is finished. It is a wise choice to make." Niall sighed quietly . Caoimhe was right, it wasn't a walk in the park.Niall remembered everything she had told him and shuddered.

"If Ni goes for this, what will actually happen then?" Louis was anxious to get all the facts.

"Well, Niall would have a pre assessment to make sure he was as well as possible. Then he'd be admitted into an Isolation unit. Stem cells will be collected from his bone marrow, skin and fat tissues over  a week or so. This is then frozen. Then chemo is started. As the immune system will cease to exist, Niall would be kept in Isolation to try and prevent him getting any illnesses. This is absolutely crucial as his body will have absolutely no defence and even a cold could prove fatal. Once chemo is completed then Niall will receive his own stem cells back via an IV system." Paul's voice was calm, matter of fact. He looked at Niall to judge his reaction. Niall was staring at the floor, twisting his fingers together, his left leg jigging up and down. Paul watched as Liam gently put his hand on Niall's knee to still the restless movement. Looking at both Liam and Louis' faces, Paul knew that Niall was going to be supported through whatever he chose to do. Their love and  care for their young bandmate was so transparent.

"And the risks?" Louis persisted. He wanted to make sure he understood as much as possible.

"The risks, apart from the side effects common to Chemo, will be that his entire body could shut down. He'll be at risk from infection, blood loss, breathing problems, kidney failure, etc. As I  keep saying, ity is going to be mentally and physically challenging. I advise that you think this through seriously, Niall. Are you willing to take those risks? Do you think the outcome will be worth it?

Gentlemen, there is absolutely no rush to make a decision. Niall, you will need to continue with your regular appointments with me and with your Clinical Nurse Specialist, regardless of your decision. I'm always available if you wish to ask any questions or if you require more explanations. The nurse will also be able to help you. I can arrange for you to talk with the Consultant Oncologist as well. He'll do a far better explanation of the Chemotherapy . 

"I have to do my rounds now but please feel free to use my office and continue to discuss this matter with each other. Louis, thank you for joining us. I appreciate it and I am sure young Niall does. Niall, you've got a great support team. Use them" He ruffled Niall's blond hair gently before excusing himself, leaving Liam, Louis and Niall  together.

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