My Lymphoma has returned

Hi again , I was half asleep when I answered you so the brain did not think through the DA - Dose Adjusted ;) 

So the adjustment of dosage is normal and as this is a long term treatment (5 days x 6?) they can look to see the best way it is working. The growth areas will take time to go down and it will take all the treatment to kill it off. As you say, if you are have problems with the treatment your team can look at other treatments that may be less a struggle to take.

The main things I did during my R-EPOCH was drink lots of water as this will help your kidneys by flushing out the toxins and the cells that are melted away.

Try to keep eating as you need to keep your energy level topped up with food.

Keep some exercise going. I would take my chemo stand for walks after every meal - exercise does help over come the ever increasing fatigue.

It may be a good idea if you start your very own disccusion and this will keep all your support in one place.

Just hit the 'Start a Discussion' tab near the top, give your thread a name and post away. 

Remember to go to the right on the home page and indicate how you want to receive email notifications when someone answers your posts.

As I said you can see my story on my profile.

((hugs))

THANK YOU MIKE FOR SHARING YOUR EXPERIENCES AND THE TIPS ON HOW TO COPE UP WITH THIS.ITS A BIT FRUS.TRATING SOMETIMES.I SUPOSEDLY HAVE TO TRAVEL BACK HOME IN SATIRDAY THIS WEEK TO ATTEND MY DAUGHTER'S GRADUATION BUT MY HEALTH COMES FIRST.

ALGD

Hi again , your reply for some reason ended up in the 'New to Community' page but I got our Admin team to move it back to this thread. It can take a little practice to get the hang of the site but keep going, you are doing great and well done getting something in your profile -it helps a lot.

As I said, you could think about starting your very own thread using the instructions I gave you further up.

Is the journey to your Daughters graduation long? It would be a shame if you missed it. The one thing you have to do is control the infection risks but you can't do this in large crowds - but is there a way to make this happen - get your daughter to talk with her Uni - even FaceTiming into the Graduation could work.

(Edit) where do you live?

((hugs))

Hi Lynda

good to hear from someone in the same boat.

currently in hospital about to start R - DHAP - had my PICC line in this morning - not as bad as I thought.

strangely I’ve had a pain in my right thigh since I finished my R - CHOP chemo! The PET scan showed it only in my top left quadrant

i wasn’t on any maintenance treatment 

have the suggested a stem cell transfer to you? That’s the plan for me provided I respond well  to this chemo.

all getting a bit more serious now - makes last year feel like a breeze!

stay strong and let me know how you get on xx

Hi John

Currently in hospital waiting for my R- DHAP chemo to start. I found another relapse lady on the forum.

i have multiple sites in my left top quarter . The biopsy showed DLBCL which is what I had last time so we are assuming it’s all the same??

the plan is to have two sessions of R-DHAP then another PET scan. If I am responding well to the treatment I will go on to have an autologous stem cell transplant.

i made the mistake of pushing my consultant on percentages yesterday - he’s always straight with me but I must say I was a little taken aback.

at no time during my first encounter with lymphoma did I think they wouldn’t be able to cure it! Now, for the first time I feel scared and although my husband is wonderful and caring and totally supportive I don’t feel I can tell him how frightened I am - he was there at the consultation so knows the information

Having said all that I feel strong and healthy at present - no b symptoms unlike last time. So I feel in a better place to start but understand this chemo is going to be tougher than last time. Had a PICC line fitted this morning - really wasn’t looking forward to that but it was t too bad.

I’ve now been here 24 hours now and my treatment hasn’t started - the ward is incredibly busy - they have had to draft in nurses from other departments so don’t know if I’ll even get started today - we’ll see.

sorry if I have ‘over shared’ it’s just good to get it out!

sue x

Hi Sue, first share as much as you wish or need, we do understand as its hard to share those inner thoughts sometimes with family, I have not had a transplant but did half expect my initial treatment to fail so sort of prepared for that next step, fortunately never needed. But I do know many who have been through this over the years more for HL than NHL, the discussion is a scary one as they have to tell you all the possibilities, so I would advise you balance that against the knowledge that stats are always out of date and at least 5 years behind what is currently happening. Secondly transplants and auto transplants are a more common procedure compared to 10 or 20 years ago and they understand and manage the treatment much better now than they did.

Hope you get that first cycle soon as waiting on a ward is not the best place to be, do think about joining the stem cell transplant group

https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/

the are not a lot of NHL folk there but the group do understand and have experience of all that comes with auto or allo transplants and the conditioning treatment and post treatment recovery, Lynda has joined the group too and pops up the odd post as her conditioning treatment progresses, think she had had 2 cycles now and may be due a scan.

Keep posting and here to listen too.

John  

Hi again Sue , it is good to hear from you but not good that you are waiting around to start treatment - I often had to wait long periods of time being in the ward to starting but you will get there.

This forum is a great place to unpack the stuff that is going on around you as we do all understand - so over sharing is good.

As John has said we do have a dedicated Stem Cell Transplant Forum (SCT) where folks from many blood cancers support each other on the SCT rollercoaster. 

SCT is a rather unique journey, hard at times and for some a long recovery but it is all do-able and the results?...... well 20 years ago I was diagnosed with my rare type of T-Cell Non Hodgkin's (Skin) Lymphoma that I was told could never be overcome...... fast forward to September 2016 and after lots of chemo, radiotherapy and two Allo SCTs with cells from my big brother I am now no cancer evident - get the big smile :) 

For SCT you do need to be cancer clear for the best results in a SCT so some of the salvage and conditioning chemo can be strong but it is a means to an end, but having said that, I was never cancer clear going into both my Allo SCTs.

This is some bedtime reading about SCT

Macmillan SCT Info

Bloodwise 7 steps of SCT

When you have time you may want to update your profile as it does help other support you and at the same time you are supporting other looking in.

Always around to help out as best as we can.

((hugs))

Hi, susan-d, I've just updated my journey on the stem cell page. If pet tomorrow looks OK we'll be pushing to harvest in about a fortnight. Don't like the sound of the odds so I'm not asking! Fear of the unknown is my problem.... I try and just think about the next 24 hours! 

Regards, Lynda xx

I am so sorry for your re-diagnosis!  Sending you the best thoughts I can, and hopes for strength and a swift and thorough recovery!

I just finished my own chemo for lymphoma, but I was put on CODOXM-Ivac, which my doc told me was very high dose.  Originally they had me slated for RChop, but changed their mind when they saw how quickly my cancer seemed to be growing.

I see that they're contemplating a Stem Cell Transplant for you.  My husband had one in 2006 when he was diagnosed with Multiple Myeloma, and it increased his life expectancy to 12 wonderful years.  He passed in October from a heart attack, so who knows how long he could have remained cancer free?