Hello I’m new to the group. Last April my then 10 year old was diagnosed with hogskins lymphoma- our worlds turned upside down overnight 
after 5 months of chemotherapy in October 2023 the scan showed clarity and his consultant said no more treatment was needed. He was so happy! Life was finally getting back to normal for him, come January 2024, the first scan since treatment showed a return, after a biopsy and another pet scan, it was confirmed that he had relapsed. He is now undergoing salvage chemotherapy, and the plan is high dose chemotherapy followed by a stem cell transplant. To say we’re beyond devastated would be an under statement. He’s had one cycle so far of IGEV and currently under going gcsf injections - all in preparation for the high dose. I’m terrified of the high dose - I was hoping others could share their experiences with me, and give me some hope that there is light at the end of this extremely dark tunnel. Thank you for reading xx
Hi MySoldier and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your son. I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well…. especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT) the first in June 2014 then again in Oct 2015…… and I remain in remission to this day.
What type of SCT is he having?….. as I said I had an Allograft (donor) SCT….. this was because I could not be put in remission to be able to go into an Autograft SCT where my clean Stem Cells would have been harvested and returned after my immune system was killed off.
So what type of SCT is he having?
Hi again and thank you for this information.
No I could not have an Auto (Autologous) SCT……. my spellcheck changed Autologous to Autograft 
……
To have an Auto SCT you need to be put into full metabolic remission to be able to open the window for healthy Stem Cells to be harvested…… this was not possible for me so I had to have the more challenging and dangerous Allo (donor) SCTs
Has his team given any indication as to when they think he will be in a position to harvest his Stem Cells?….. when I say harvest this is basically like giving blood, painless and straightforward.
OK..... so the high dose chemo will be for the week or so before his Transplant Day - Day 0
This chemo is used to clear out his immune system and his bone marrow in preparation for getting his harvested cells back........ on the whole it is strong but the main drug to look out for it Melphalan - the M in any of the conditioning protocol.
I had to chain suck ice lollies for the 30mins before, during the M infusion that took about 30mins then was told to keep going for a further 30mins.
I lost count but must have had but did have the mother of all freeze brains every......
Over the years I have talk with people who’s SCT units don't give ice lollies!!!!! so if this is you just go out and get them and the ward staff will put them in the freezer until you need them.
In my SCT unit the weeks leading up to the M and all the way through until I got out of the unit I was using a two pack oral mouth rinse called Caphosol. So I set my phone for every 3 hours to make sure that I was doing this all day. My head consultant said that the Caphosol was rather expensive but if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to overcome any bad mucositis. I did well with only one very small area developing and it was not a problem.
So whatever they give him to use, use it EVERY day as it does help.
This is my very ‘simple’ SCT guide.
For an Auto SCT (using your own Stem Cells) the patient will have to be in a window of remission so that their Stem Cells can be harvested this often requires what is often called salvage treatment.... basically some chemo that can often be strong but is designed to achieve the goal.
The patient will most likely have a week of injections to make the bone marrow work overtime to produce lots of Stem Cells.
To harvest the Stem Cells a line is put into their arm. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job by the bone-marrow so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood stream.
The machine can pick out millions of stem cells over a 4-5 hours process. The harvest is on the whole painless and once harvested the Stem Cells are frozen.
Those having an Allo (donor) SCT the harvest process is done by their donor with out the chemo as their Stem Cells are cancer free.
Leading up to the actual SCT the patient will have to have treatments to get to a stage where the SCT can proceed.
So 7ish days leading up to the SCT day he/she will have to go through what is called Conditioning, its a method of taking down the bodies Immune System completely.
This is normally done again using some very strong chemotherapy and for some like myself, Radiotherapy..... but I had an Allo SCT.
Once the Immune System is taken down they give the harvested Stem Cells just like getting a blood transfusion usually through a Central Line.
The Stem Cells then go to the Job Centre in the Bonemarrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells and the all ’New You’ starts to grow as the body starts to reboot the Immune System and over time the blood counts come back up.
Its all very clever, very science fiction but all very do-able.
Each SCT Unit will do their own thing but for an Auto SCT some of the conditioning can be done as an out-patient then when the patient is get closer to get the cells this is done in a dedicated SCT unit.
Its a very clean environment (Ward) in a hospital, the patient may even get their own on-suite room. The time in the unit will be different for everyone but expect at least a few weeks - but the medical team will keep the patient well informed.
Remember the patient does not have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until new immune system kicks back in. The patient will be an in-patient for some of the time but this all depends on how fast the ’New You’ starts to grow. The average is about 4-6 weeks in the unit but can be quicker.
Once the patient gets discharged they do need to be very carful during the weeks following the SCT as the new Immune System is still growing so care with coming in contact with infectious environments but their team will give lots of guidelines.
Expect weekly appointments for bloods etc as they will want to keep a close eye on the patient.
I would also say that the fatigue following a SCT is much higher than going through regular chemo but that could just be me, going off food and some mouth issues do come along but these SCT teams will help as they have seen it all before.
I always say that you can’t do anything to control the actual medical treatments but you can make a difference to how you get through your journey, but we can help you get though this.
No, I have not heard of this therapy.
You could send your question to our nurse team in our Ask an Expert section but do allow 3 working days for a reply.
You may want to check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms with groups for Carers and Family..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
