Hi

Hi Tamencio

Yorkshire I would never have guessed that, me I’am a Lancashire guy, yep although my main scope is PC sure I will be able to give help to a few on here.

Take care

Joe

Hi Joe joeven Yes there are many different cancers just in this one group. If people want others to know the type of cancer they have, they would normally fill in the Profile Page with bits of info, so if you are curious, that's the place to look! I'm in Scotland!

Hello jo joeven

Welcome to one of the finest groups I have ever known. Sorry you qualify to join the club but we are glad you are here.

I live in Kauai and I have mantle cell lymphoma (MCL) - it is a lethal and incurable non-Hodgkins lymphoma and the average life span from start of treatment is 3 years.

That said, my high lymphocyte count was found in 2014, diagnosis of MCL 2015 and I’m still here 2020. 

Sometimes it’s all in the timing. For me, when I needed treatment a new targeted therapy had  been approved 3 months prior . But I could not receive  it without first having treatment with Chemo in my case a close relative of mustard gas infused into my body. . (Read profile for details)  Experts  are now saying that this new targeted treatment is almost a ‘cure’ for ~10% of patients . We will see. 

So indeed, no one should give up hope -because miracles do happen through the work of excellent scientists, physicians and their application. And the science is getting better daily.

Hope to all,

millie

Hello Millie

Thats a fair story, there at the right place right time, sorry to ask but, did they say how effective your treatment was, or do they need to give you another dose ?

You have done so well to battle it through the time allotted, I can imagine there was a fair few tests and scans with probably more to come.

I have to aquatint myself with more of the different cancers, but we’re all in the same boat, so even if I do not know much, I can certainly give help and support.

Take care

Joe

Dear joeven Joe,

My first oncologist wanted to start Bendamustine (a form of mustard gas) and Rituxan together called "BR" immediately, (January 2015) he told me that with BR treatmentI I would never feel good again (charming).

However, I am a academic and I studied the field intently and found that treatment was not recommended until clinically required, so I fired him and got a second academic MCL oncologist.

In addition, through educating myself I saw that there was a possibility of the new treatment coming down the pipe in a few years so I put off the BR treatment as long as possible.

In March 2018 they found several lymphomas in my abdomen (encircling  my kidneys and vena cava)  and in my head and neck (two were ~5 cm long) and I was having extreme difficulty breathing.  The first March 2018 BR treatment was brutal, but because of my bad reaction to chemo I was given the targeted (ibrutinib) drug in April 2018.  I continue to take the pills twice a day with side effects of bruising and fatigue. Every 3rd month they infuse me with low dose Rituxan to kill any stray B-cells. Bad side of treatment is I have very few T cells and no B cells so I am very much more likely to have a serious infection when compared to my fellow incurables.

I was in complete remission (CR)  (no sign of old or new lymphoma by PET/MRI ) and at cellular level negative minimal residual (MRD) disease (which means no MCL cells present)) in August 2018.  

Last MRI scan in November 2019 again showed no evidence of disease (NED).  

I have a second  PETMRI scheduled for later this month. A PET/MRI is where they inject a form of sugar that will go to the fastest growing tissue and reveal tumors using time of flight mass spectrometry (TOF). the MRI scan portion will show details of all structures over 1 cm.

I consider MRI better than CT because 1) there is no radiation exposure and 2) shows a lot more detail in 3-D.

The dark side of my disease treatment is that ongoing clinical trials are now showing progression of disease in some patients as early as 16 months and progression and death can come as early as 3 months. Other patients are going longer and some of the trial physicians are thinking if the patient is CR and neg MRD for 2-3 years they may be able to go off the drug (a mini cure) which is incredible for this fast, aggressive and fatal disease.   So in my case, we continue to wait, scan and surveil.   Regardless of the upcoming scan, I have had 6 years of high quality of life which makes me feel very lucky and thankful. 

I know this is probably too much information, but now you have the details, hope it helps. 

Warmest Regards and Hugs,

Millie

Hi Millie

Thats a lot to take in, this type of cancer is a real killer, with not a lot of Lea way as regards medication, but having said that, you did your homework, as I did when I was told, searched every data base different communities got as much information that was out there.

I am not saying that I’am super intelligent, just very diligent to what’s on offer, even now I check for any new drugs on the market or trials.

Take care 

Joe