Glofitamab

Hi again Virginia.H I have had a search through the site and there is no posts with Glofitamab mentioned but that’s not to say that someone has not had it.

You may want to check out the Lymphoma Action  Support Platforms as I have seen it mentioned on a few posts.

They also have a great Lymphoma Action Buddy Service where they may be able to link you up with someone who has walked the same treatment journey.

Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support

There has been a research paper released in the last week or so I read it on another platform today talking about the trial results and it looks like it could be a good option based on the small cohorts so far if its the starglo trial you want to know about. https://lymphomahub.com

Hi Virginia H

Hope you are doing well. I also started Glofitamab in June of this year and would be interested to hear how others are doing with it. As it is so new there is very little peer experience online and it would be great to find out more.

Thanks 

Paper Tiger 

Hi Paper Tiger,

Yay, someone else who is on Glofitamab!

Thank you very much for reaching out, it's wonderful to hear from you, I haven't met anyone with the same cancer let alone anyone on Glofitamab, so I'm keen to hear your experiences. 

I've looked up lots of medical papers online since June, and it's really fascinating! I don't know how much you know about the mechanics of it all, I'm sure you've looked up online as well, but if you want a run down of what it is and how it works do let me know. I love talking about it, it's fascinating!

I haven't met a single soul whose on it, it's brand new as of I think January in the UK, it was approved in July of last year in the USA. Of course it has gone through all the trials and tests over the last couple of years. It is specifically designed for Non-Hodgkin's Lymphoma that has failed two or three lines of treatment thus far. And it provides a completely different experience from chemotherapy as you know! Exciting stuff! 

Did you know it's absolutely eye wateringly expensive? My consultant hinted that it is around about £4-500,000!!!!! So we are extraordinarily lucky to be receiving it. I'm receiving it via the wonderful NHS, I don't know if you're receiving it through private insurance or through NHS?

The side effects are very interesting, not as many or as severe as chemotherapy, but in their own way they're very much there, but subtle. 

My experience has been mainly that it makes me miserable at times. Not so much now nearing the sixth cycle but certainly the first four. Feeling low can be one of the side effects. That is not my nature, I'm not a miserable person, I'm a very very happy chatty person by nature. 72 with a lively bright mind.

I noticed in the first two Cycles I was irritable and unhappy. Both side effects. The side effects seem to be neurological and not so much physical, although my neuropathy is worse, I can't say that there's been any other side effects. Apart from being ravenously hungry for the first five cycles, but that makes sense because your immune system needs all the power that it can possibly harness.

How about you? Have you noticed anything? Have you noticed being a bit snappy in the first couple of cycles or feeling a bit low?

Apart from that I can't feel it. And because chemotherapy is so profoundly awful as far as side effects are concerned, it makes one think that the Glofitamab is not working... But yet it is. I just had another PET scan a couple of weeks ago and it's remarkable how much cancer is not back. I no longer have cancer in my chest hip abdomen lower back knee, however it is still in my fibula bone wrapped around it broken, and through the calf muscles and various structures in my lower leg. But that's the only place. I'm having another PET scan October the 2nd so it will be interesting to see how it's progressing. 

My cancer is particularly sneaky and aggressive, as obviously is yours, otherwise you wouldn't be on Glofitamab. Our cancers keep coming back so it will be interesting if this new treatment actually kills it once and for all and gets to the place where the cancer hibernates. 

Anyway Paper Tiger, I could talk for another five paragraphs, but I want to hear your experience. What side effects have you been experiencing? Have you had your regular pet scans? How do you feel? Are you being treated at Hammersmith hospital in London? 

I have #6 Monday!

Tell all PT.

Virginia 

Hi Virginia 

Thanks for your reply and delighted to hear the drug is working well for you.

I also have done my research on the mechanism of the drug and it is incredibly exciting with a move away from traditional chemo.

I can relate to the emotional and psychological side effects and these are definitely listed. I just had cycle 4 on Wednesday and the pattern I am finding is generally I take a real dip physically the day or two after which lasts for about a week then I build up strength and energy. The symptoms for me are a bit like flu symptoms (achy joints and muscles with breathlessness/ fatigue) 

After about a week I become quite active again, I am 50 so get out walking ect and have a busy family life. 

Very fortunate to be receiving this on the NHS and have a forward thinking supportive Haematology department in my area.

I originally was diagnosed with follicular non Hodgkins back in 2017, reached remission with R- Benda. Relapsed 3 years ago and received r-chop then stem cell transplant which we hoped would put me into a nice long remission. Unfortunately relapsed and transformed again this year to an aggressive diffuce -B cell. It's been a bit of a journey and feel so sorry for my family, was facing more high dose chemo until they last minute brought Glofitamab to the table. Really feel they have thrown me a lifeline and keeping positive.

Actually had consultant today to discuss scan but results were not back so waiting for a call.

So it's great to have contact with someone else on the treatment.

Hope the next scan shows good news for you.

Best wishes 

P