Treatment

Dear ,

Yes, BR is chemo mixed immune B=bendamustine (mustard gas with an extra molecule or two) and R=Riituxan a monoclonal antibody against CD20 (B-cells). I have Mantle Cell lymphoma and have been well for 2 years using BTK inhibitors but reached the point it was not working well, so On to the more harsh BR, but for only 2 cycles I think.

Bendamustine caused spontaneous fracture of my T-8 vertebrae, so this time we are building up vertebrae between BR cycles with a new bone drug that actually makes bone to grow, especially vertebrae and hips.

So I have 2 months of BR and then 10 more months of medication for the anabolic bone growth.

We will see it it helps keep me from spontaneous vertebrae fracture.

warmest regards,

Millie

Hi Millie, Wow, your new treatment sounds amazing! I do hope it does what it says on the label and builds the bones to make them stronger! Isn't it amazing what they can do nowadays. I have also had problems with my spine and now have a metal bracket holding it together! 

I know you are accross the sea, in North California, I remember you saying. My husband and I toured California for our 30th Wedding Anniversary and loved it. We were there for almost 5 weeks that year and drove all the way up the coast, from Ocean Beach, stopping and staying in San Diego, Oceanside, Santa Barbara, Carmel, Monterey, Santa Cruz, then spent a week in San Fransisco it was fantastic. We have been back since to San Fransisco,(our favourite place) The China Town there was amazing, visiting Alcatraz & Sausolitto. I'm wondering if you are near anywhere we visited!

Good luck on Monday but no doubt we will chat before that!

Hi Annette,

yes treatment for bones is good. My back pain was cured by my microdisectomy operation.

i can now walk OK.

i also loved the California coast and went back to SAN Francisco after the first visit 

live xxx

ruthjp Hi Ruth Yes we loved it there! I don't think it is a place you can go to just once, it pulls you back! As does Barcelona, I love it there too!

I'm so pleased your op has been a success, was that a while ago, I think I remember you saying about it! One of the worst things is not being mobile!

My Dear anndanv,

Thank you for your kind post.  I have the new bone t treatment on Friday, and we will see. But I know the folks at MIT and the University of Alabama that developed it with Amgen, so I know it works what I do not know is why they give it to you the two separate sytinges and make you come into get the treatment.  My suspicion is that the subQ  1ml injections may be really painful.  Ill take a couple of pain killers before I go....Ill keep everyone informed as to progress in growing my spine, took my Dexa scan last week that will be my reference mark of making progress.

Perhaps I should have asked about a metal bracket....

As to where I am when I'm in Northern California I am just north of the Golden Gate Bridge and it takes any where from 20 min to 50 minutes according to the branch of UCSF medical school I go to (for different body parts)  My most common one is about 20-25 minutes in easy Covid-19 traffic. I am very close to the city, Alcatraz and Sausilitto. So you probably passed me when you were on Hwy 101 going south.  You can see Hwy 101 from my sun loungers on the back deck. No more rose fragrance however, it is getting a bit hot here again.

Did you make it to Yosemite on your tour? That is the most spiritual place in the world.  I think God the force lives there. Ansel Adams did a great thing taking his photos of Yosemite. But there is nothing like camping there its quiet and peaceful and in May it is perfect with newly blooming dogwoods and the sound of roaring falls. If you like photography, they have the Ansel Adams tour of all the locations he took his famous photos. Absolutely breath taking. Guess I could have been a mountain woman in you youth. I do love it there.

I keep saying Im fatigued and going to bed, well I think I will

Goodnight everyone and Godspeed to Happiness,

Millie

 Hi Millie, That's good you have your first treatment on Friday, so not too long to think about it! Have you thought they may want to keep a close eye on you when they give you the injection, just to make sure you do not have any immediate side effects? If it is in 2 injections, there is probably a good reason, other than it being painful! The first one may be to make sure all is well. Or Maybe the fluid is a bit thick and takes a while to go through, so they are giving you a break, I'm sure there could be lots of reasons. You should ask them!

Oh you live in a lovely part of the world but it's too hot for me! Unfortunately we didn't get to Yosemite on that visit but we had planned to go back to see some of the National Parks. We diverted from San Deigo and drove to the Grand Canyon, stopping at a few places on the way. We stayed in a lodge inside the gates so that we could be there for sunrise and sunset. Now funny you should mention photography! My husband is a photographer! He's Officially retired now but once a photographer always a photographer, his camera goes everywhere he goes! We drove from the Canyon to Las Vegas and spent 5 days there before driving back through the desert to LA then all the way up the coast! We couldn't have done the places we visited any justice if we had also tried to squeeze in Yosemite! We had planned to do that the year I got diagnosed, so it's been on hold! Who knows, I never say never but at the moment, I'd be happy to go a 20minute drive to Loch Lomond or to the seaside!

Good luck on Friday, just in case we don't chat before then! Take Care 

What a good trip xx