Immunotherapy treatment - Rixtumab

[debbiev]

I would like to know from some one out there that has gone thru the  above treatment.

I have my first infusion on the 14th February this year.   I have been extremely tired is this just a phase I am going thru or will I always feel like this.   Mind you before I had cancer I used to only sleep about 4 and half hours a night but now it anything from 5 hours to even  9 hours a night.  

[Bushwalker]

Hi Debbie,

My first cycle of rituximab was very bad reaction. Started off awful pressure in chest then niggling cough then I felt like getting sick. I told staff not feeling to good then I collapsed in chair blood pressure went to 70 over 30 I was just barely conscious and could just hear specialist telling me to breath. Every treatment after that was pressure in chest and then niggling cough.  I could not have fast infusion. 3 days after would occasionally have blood trickling out of nose. Had 2nd treatment the following Tuesday and went home. 2 hour drive. Was home for 10 minutes and ended up in hospital with Febrile Neutropenia on IV antibiotics. Had 3rd treatment.  Got home for half a day ended up in hospital with Febrile Neutropenia again. Had 3rd treatment. Carted off to hospital again with temperature 38.5 and pulse 110. 4th treatment . Temperature all over the place and pulse all over the place. All down hill from here on CRP off the chart missed some treatments because CRP to high. Finally got 8th treatment done. Suppose to have 4 more. 1 every month. Then maybe every 2 months. I have blood cancer.  Fatigue awful. Which is normal. 

[debbiev]

Bushwalker

How often did you had your immunotherapy sounds like it is more often then me.  I have one every 3 months my next one is 14th May.  When I had my final petscan it highlighted in an area in my chest which the doctor said he didnt think it would be another lymphoma but like a chest infection .  Like  you I had a cough which hurt everytime.  Went to doctors got a CT scan done on the Friday but by the following Tuesday if should nothing highlighted they couldnt see anything.  I still have a cough by only occasionally.

Bushwalker did you have lymphoma.

[Bushwalker]

Hi Debbiev, 

It was supposed to be 1 every week for 8 weeks to start off. That plan went out the window with all the infections I had. Fatigue is normal. No I don't have Lymphoma. Have a rare leukemia. HCL. Had infections in lungs / Pneumonia.  Had I think 2 normal CT of lungs and 2 CT of lungs with dye. That was a weird feeling the first time with dye. I don't sleep much as well. This is normal for me. Not because of cancer or treatment. Can't get rid of cancer. Just try to push levels down. 3rd time with this cancer.

[debbiev]

Dear Bushwalker.  Thanks for your advice.  So sorry you have so many problems with your treatment.

Dealing with this illness can be quite exhausting some times.  But overall I am trying to stay positive and get on with my life.

[Bushwalker]

Hi Debbiev, We all go through our own individual battle. We all have different types of cancer. Treatment varies from patient to patient. All cancer patients are family. Back when I first got ill. I went through a very difficult time. I found a log by.

SteveC, Have cancer got no friends. That blog helped me a lot. To read what others had also experienced. Keep positive and we are all with you.

Take Care.

[Lindsay]

Hi Bushwalker, your resilience inspires me. What a wonderful attitude......take care...Lindsay

To you Debbiev, good luck with your treatment. I hope it isn’t as dramatic as our friend Bushwalkers.🤞

[Colin81]

Hi Debbiev,

You are quite right we are all different and the same or similar sort of treatment can have wide ranging effects. I had NHL in 2003 and was treated with CHOP (6 doses) which was a quite common treatment option, quite a difficult time, off, work for a long time. Rutaximab was available then but ONLY on the PBS if the CHOP  did not work, it was more freely administered until later on (and incorporated in R-CHOP).

In 2005 I did receive the Rutaximab (4 doses, 1 per month) after my blood numbers were not where they were supposed to be. I did not have any particular problems with it, primarily fatigue which appears to get worse as you age (my opinion only).

As to sleeping, like you I only slept for a few hours but now  I sleep a lot longer, I see that as a bit of a bonus actually.

Fatigue and chemotherapy seem to go hand in hand, a great toll is being taken of your body and mind during and after treatment. My words of advice are, stay strong, remain as positive as you can, there are times when it just builds up to much, then let it out. Go forward, just go forward, absorb the diagnosis absorb the treatment, nothing is going to change now.

[debbiev]

Colin 81 if you had Rixtumab so frequently in 2005 people like you and Bushwalker had bad reactions so that probably why they space mine out to once every 3 months. 

I must say when I was going thru RCHOP the Rixtumab was marvellous stuff it was really helping my immune system out I hardly got any side effects (or very little) and when I got to my 5th chemo my white blood count was down( but my hair starting to grow back too which was surprising) the next treatment it was back up there again. 

Colin have been in remission since 2005. 

[Colin81]

Hi Debbiev,

I am very pleased that the RCHOP worked for you, our doctors are learning new stuff all the time and modifying the treatments accordingly. I hope you remain well 'forever'.

But for me I am sorry to say I have not been in remission since 2005, in fact I have had two more different cancers and a stem cell transplant, now after all these years I am now in I guess what you could call remission, I look at it as having been cured 'for now'.

I was diagnosed with CLL in 2011, it went stage 4 in 2015. Five doses of FCR chemo (should have had 6 but much too ill), never fully recovered, blood numbers were always too low.

In 2016 I was given an 'absolute' clearance for CCL, on the same consultation I was diagnosed as terminal MDS with less than 12 months to live. Started on Azacitidine ( I think) 14 doses each month. Very lucky to be put onto a bone marrow stem cell transplant program (because of my age) which I had in early April 2017.

Had to cease the chemo (Azacitidine) to do the transplant, took quite a few months to arrange, quite ill. The transplant process for me was extremely difficult, mentally and physically, several months in an hospital isolation ward, a few complications (fewer than most), back into hospital a few times, quite a few 'legacy' issues still with me but some seem to be improving with time. Celebrated the 3rd anniversary a few weeks ago.

Still here, still okay.