Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

Finally nearing a diagnosis

Thehighlander
Posted by

Well done Minty, remember to drink lots of water to keep your system flushed...... the hiccups are rather odd, I had them during my Stem Cell Transplant and my team gave my a Blue Pill and it worked, I was also was told it was most likely some of the anti sickness drugs.

The weather is great so try and get out and about for some short walks as this will help over come any fatigue and watch out in the sun as your skin will not be as resistant to UVA so a hat and good sun screen are a must. 

Rest up and Highlander ((hugs))

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

johnr
Posted by

Hi, good to read it went reasonably smoothly and a reaction to R at that point is a good omen for future rounds and you may find you are ok with it, never heard reactions to R being linked to bulky masses if thats what you were told, I always understood it was down to the mouse cells and how our bodies respond to the foreign body (the cells).

I had hiccups to and the blue pill Mike refers to is an anti psychotic drug they use, I never got them due to all the meds I was on and the hiccups lasted 3 days and each spell could last up to an hour, I always remember shopping in Sainsbury's on a sturdy night, hiccuping all the way round the shop.

Hope you bounce back quickly

john

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

Minty61
Posted by

I haven't been on here for a while but a quick update. Getting used to all the joyful mysteries of R-CHOP that have presented to date. Constipation is the side effect of the moment and hoping to get things more under control there. Please to find the nausea and taste issues do seem to get better during the cycle and I'm a starting to be able to find things I can eat and drink again until the next time. I did get a bit if tinnitus for the first couple of days. In work with and support patients who suffer with this so wondering if this is likely to be a longer term issue for me if I'm getting it already. I know you suffer from it Mike so would be interested in your experience. Should I be letting the team know? 

A really big disappointment yesterday. My biopsy tissue sample had been sent off for analysis pre starting on the acalabrutinib for the ACCEPT trail. All the other boxes had been ticked however the sample is not suffice in quantity to quality. So it's looking highly unlikely I'll be able to continue with the trial. It's been quite an investment in the whole things for me with a change in hospital, extra painful tests and a delay in treatment start date so must admit I was in bits. One last possibility is leaving me in a bit of limbo once again. It's just possible they could do another biopsy but I rather doubt they will feel its worth the risk and time is really short. All results would need to be in by next Friday. 

Watch this space!

Minty 


Thehighlander
Posted by

Good morning Minty and it is great to hear that you are making progress. 

Constipation can hit 'hard' (what a thing to type just after breakfast) and for me it was the Steroids so I did lear to take some Laxido a few days before, during and after the Steroids and it did help a lot.

You should report the Tinnitus to your team to keep it on the table as some treatments can develop some short term ringing in the ears but from what I have seen it comes ok but makes it darned difficult to sleep with :( ........ lol that statement sounds rather odd ;)

Before my main treatments I already had some Tinnitus due to the types of work I was involved in but I was put a drug called Bexarotene 7-8 years back that did my hearing some irreparable damage. An MRI showed that my connections to the part of the brain that controls the sound levels were mince so I am now on two hearing aids. But these can be useful when the granddaughters are round or I want thave selective hearing ;)

On the whole the Bexarotene did a great job of keeping my skin Lymphoma under control but my Cholesterol went up to 12.2 and my Thyroid was closing down so the Bexarotene was reduced and various other drugs were used to get these new issues under control but this allowed my main Lymphoma to get out of control then the rest is history.

I was on it for two years at £80 per day!!!! but one report in the USA shows how Bexarotene can help Dementia!!!!! but at that price I dont see it becoming a main treatment any day soon....... but it looks as though I might be ok in the future ;)

Pants about the trials but the important thing is to keep walking to the light, you have came a long distance and the start of the tunnel look smaller than the exit.

Highlander ((hugs))

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion