Hodgkin’s lymphoma relapse survival rates.

Hi again , an auto SCT is seen as the less dangerous routes but as my team could not get me in remission my Stem Cells could not be used so the only option as an Allo - two Allo’s was always the plan as we were not sure if the first would do the job but it’ll it did I would recover quickly and move on but it failed so we had to use the second roll of the dice - now 4 1/3 years out and doing great.

I git through the process rather well, yes some hard times but for me it was keeping my eyes fixed on the greater good in all this,

Having had a look at greg777s great post I am reminded that both my wife and I were supported by our SCT unit psychologist from the first day we went to the unit, having regular meetings throughout the two SCTs and for a good year post treatment.

This most likely helped to regulate the development of the long lasting mental effects the process can bring..... so the early intervention helped us a lot. 

Hi again, Jessy,

our daughter just never got a remission in all that time. They rushed her through an auto (in those days there were no PET scans) and we now suspect she wasn’t ever fully responding to any chemo. It was Brentuximab Vedotin which got her into remission, her consultant obtained it for her (then called SGN-35) on compassionate basis while it was still waiting for FDA registration. 

Because you’ve definitely been in remission then chemo does fully work for you, so an auto should get you into a lasting remission, but I do understand your fears about not trusting your own cells.

I totally agree that a psychologist will help you, it might take a few times and trying different techniques but they are very skilled and should make a big difference for you.

Hugs xxx

Hi Jessy my treatment consisted of 2 courses of IVE, stem cell harvest, course of BEAM.

I was happy to be having auto rather than allo it always made me feel there was something else that could be done if the auto failed.

I read about people who had allo having a radiation bath as part of the treatment

The treatments and challenges are very similar but if you have auto the chance of rejection graft versus host disease is greatly reduced.

I remained positive through out not really considering anything other than success.

I was in isolation for around six weeks, though l was on that unit for 3 months in total I was allowed to go home many evenings on proviso l came back by 7.30am the next day, so this helped.

I had a hickman line to deliver my chemo and l found it much more comfortable than having a cannula inserted into the back ofmy hand every 2 weeks.

Hi Jessy my treatment consisted of 2 courses of IVE, stem cell harvest, course of BEAM.

I was happy to be having auto rather than allo it always made me feel there was something else that could be done if the auto failed.

I read about people who had allo having a radiation bath as part of the treatment with and that didn't sound very nice.

The treatments and challenges are very similar but if you have auto the chance of rejection/graft versus host disease is greatly reduced.

I remained positive through out not really considering anything other than success.

I was in isolation for around six weeks, though l was on that unit for 3 months in total I was allowed to go home many evenings until my bloods made it impossible on proviso l came back by 7.30am the next day, so this helped.

I had a hickman line to deliver my chemo and l found it much more comfortable than having a cannula inserted into the back of my hand every 2 weeks, it was also a painless way of gathering bloods.

The IVE chemo was not a big problem for me apart from hairloss I had no side effects l can remember. I was told of diarrhea, that didn,t happen, in fact chemo made me a little constipated if anything. The hairloss thing, try to lookk at it as a good thing it is said that the cancer can reside in hair folicules so going bald takes care of that, lots of wigs available for women so good you can't even tell. Men however just had to suck it up and hope they beared a passing resemblance to Jason Stracham.

It is important to set up a routine, this helps and my personal preference was no vistors except for my wife for fear of infection and friends can sometimes have a negative effect I found.

Onto the treatment again after my 2 courses of IVE l had a pet scan to make sure l was clear and then it was time to harvest. Leading up to the harvest l was given some injections to encourage stem cell production, these gave me a little back ache nothing drastic. This was seen also as positive as it means stem cell production is in overdrive.

When it came to harvest they struggled a little and l had a femoral line inserted in my thigh, next day l had a good harvest and the stem cells went off to storage.

Now to destroy my imune system l was given BEAM as you may know by now chemo names are often formed by letters of the ingredients. The M in BEAM was described to me as the domestos of all chemo, only in your body a limited time and with potential side effects, well it was not to bad either, though they gave me something down my line to make me pass more water and that was the only side effect, I was urinating for England.

Now the transplant,  was just a drip feed my stem cells back quite painless, but I had to stay in issolation until my imune system recovered enough for me to go home.

I was checked at weekly clinics and had no infections at all. I  was disharged with 5 lots of medication which after 3 months l think was not required.

I had to go to the GP for vaccinations as all the things you have as a child were gone and you were starting again from scratch.

I returned to work in a limited capacity after 6 months. I am a design engineer. Then finally after 12 months l was back to full time.

On the plus side l had hay fever before treatment and that is now gone, my hair was nearly grey but it came back dark mousey.

But most important of all no more cancer.

I carry a card to say l must have irrariated blood but that is it.

I was offered discharge 5 years post transplant but l chose to stay on the books so to speak and have an annual check up.

I have written this all off the top of my head from memory so don't worry about my spelling and grammer, I can be really specific if l refer to my old diaries but l thought l should reply PDQ.

Very best wishes Bob

Hi Jessy my treatment consisted of 2 courses of IVE, stem cell harvest, course of BEAM.

I was happy to be having auto rather than allo it always made me feel there was something else that could be done if the auto failed.

I read about people who had allo having a radiation bath as part of the treatment with and that didn't sound very nice.

The treatments and challenges are very similar but if you have auto the chance of rejection/graft versus host disease is greatly reduced.

I remained positive through out not really considering anything other than success.

I was in isolation for around six weeks, though l was on that unit for 3 months in total I was allowed to go home many evenings until my bloods made it impossible on proviso l came back by 7.30am the next day, so this helped.

I had a hickman line to deliver my chemo and l found it much more comfortable than having a cannula inserted into the back of my hand every 2 weeks, it was also a painless way of gathering bloods.

The IVE chemo was not a big problem for me apart from hairloss I had no side effects l can remember. I was told of diarrhea, that didn,t happen, in fact chemo made me a little constipated if anything. The hairloss thing, try to lookk at it as a good thing it is said that the cancer can reside in hair folicules so going bald takes care of that, lots of wigs available for women so good you can't even tell. Men however just had to suck it up and hope they beared a passing resemblance to Jason Stracham.

It is important to set up a routine, this helps and my personal preference was no vistors except for my wife for fear of infection and friends can sometimes have a negative effect I found.

Onto the treatment again after my 2 courses of IVE l had a pet scan to make sure l was clear and then it was time to harvest. Leading up to the harvest l was given some injections to encourage stem cell production, these gave me a little back ache nothing drastic. This was seen also as positive as it means stem cell production is in overdrive.

When it came to harvest they struggled a little and l had a femoral line inserted in my thigh, next day l had a good harvest and the stem cells went off to storage.

Now to destroy my imune system l was given BEAM as you may know by now chemo names are often formed by letters of the ingredients. The M in BEAM was described to me as the domestos of all chemo, only in your body a limited time and with potential side effects, well it was not to bad either, though they gave me something down my line to make me pass more water and that was the only side effect, I was urinating for England.

Now the transplant,  was just a drip feed my stem cells back quite painless, but I had to stay in issolation until my imune system recovered enough for me to go home.

I was checked at weekly clinics and had no infections at all. I  was disharged with 5 lots of medication which after 3 months l think was not required.

I had to go to the GP for vaccinations as all the things you have as a child were gone and you were starting again from scratch.

I returned to work in a limited capacity after 6 months. I am a design engineer. Then finally after 12 months l was back to full time.

On the plus side l had hay fever before treatment and that is now gone, my hair was nearly grey but it came back dark mousey.

But most important of all no more cancer.

I carry a card to say l must have irrariated blood but that is it.

I was offered discharge 5 years post transplant but l chose to stay on the books so to speak and have an annual check up.

I have written this all off the top of my head from memory so don't worry about my spelling and grammer, I can be really specific if l refer to my old diaries but l thought l should reply PDQ.

Very best wishes Bob