Diffuse large B-cell lymphoma Chemo R-CHOP

Hi again  abd well done navigating over to the group.

I am sure that some of the folks will be along to say Hi

What hospital are you being treated at and what treatment are you having?

You can hit the Community members names and see our stories, my one is rather kind but full of hope and positivity.

Any questions just ask as we have all walked the walk ((hugs))

Hi Tillyteardrop, I was the same age as you when I had R chop and lost my hair four weeks after  my first treatment. I understand how frightening it can be when your first diagnosed. I think I must have a slightly warped sense of humour as I found it funny when my hair fell out . My hair was quite long at the time so it’s liberating to loose , it’s just shower & go in the morning no fussing around with washing & drying . Saved a fortune in hair dressers appointment.I found the treatment a lot easier than I thought it would be, let’s hope you do too. Have as good a Christmas as you can in these strange times .

Lyn x

I'm having R-CHOP treatment at Hull Castle Hill Hospital

Hi Lyn, Thank you for replying, when the Dr said i would loose my hair I made my mind up that I wasn't going to have a wig, so I've bought some beanies ready, when it starts falling out I will have it all shaved off, because I don't want to get out of bed and see my hair still on the pillow, that would upset me more, so my hairdresser is on standby. Hope you have a good Xmas. Take care.

Chris

   x

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Good morning Chris and Merry Christmas.

Yes hard to see the good in all this but where you are at the moment I was there over Christmas 2013 and the effectiveness of the treatment actually allowed me to have some Christmas Dinner (see my profile)

My hair was like snow (we have a lot today) on a hot day. I woke up a few days after my first cycle with my mouth full of hair, I went straight into the show and shaved the lot off - best thing I ever did. One thing less to be stressed about.

Hi Chris and sorry to see you joining us, the staff at Hull are brilliant, consultant and nurses, I had a friend who was treated there some years back and believe it or not he had a phobia of hospitals and the staff encouraged and supported him a lot to help him through treatment. 

Rchop can be tough but everyones experience is different. I had 8 rounds of it 11 years ago, make sure you drink plenty and if you get the classic dry mouth, pineapple works great. Do keep a daily diary so you can tell the team how you have been and take things a day at a time. DLBC is treatable and 11 years ago my consultant used the word cure, and here I am a living example of their great care and treatment. Ask any questions you need to, we understand as we have been there.

best wishes

john

Cant add much other than to say it is doable

Once you have been through a couple of cycles you will know what to expect and will find it easier to deal with

Make use of the days when you feel ok and just rest as much as you can on the duff days

Hi Tillyteardrop

Im sorry to hear that you have been diagnosed with DLBCL. That being said, the unknown can be so much more frightening than the actual treatment itself. To say I was frightened at first was an understatement. I was diagnosed with DLBCL two weeks into the first lockdown. I had three rounds of R-Chop and three weeks of radiotherapy. I had a few side affects but certainly not all of which my team listed before treatment started. I lost my hair just after my second round of chemo started. Now five months on since my last round, I have a full head of hair again.

I am now in remission and due my 12 week scan post radiotherapy next Tuesday. I can’t believe how quickly the last six months have gone. I took one day at a time, ate healthily, did what exercise I could and drank lots of water. 

Im am a 59 year old man and I just went with what my team told me. Any issues (not many) I’d let the team know. The treatments are very effective and the future does not have to look bleak. 

Stay strong and believe in yourself. We are all so much stronger than we believe. 

kindest regards

Dear Tillteardrop

I am in exactly the same place as you.  I was diagnosed with DLBCL on  Wednesday 23rd December.  I Knew it was non-hodgkins before that having been told at the Linda McCartney.  DOctor referred me there as I had breast cancer cells in my left breast 11 years ago.  Anyway, I have now had my PET scan and on Monday, 4th January, my treatment will be in place, like you, it is likely to be R-CHOP.  I am scared too, it's fear of the unknown.  What to expect.  I can handle the hair loss, it's the rest I dread.  Side effects and not being able to live a life of sorts.  I want to be able to work, visit my mum and look after my son.  I can work at home as I video call students and don't mind shielding but I am composing myself.  I am preparing my body with good food, meditation, exercise and keeping occupied but, yes, fear can be gripping and its' like a runaway horse and you're the rider.  As the rider, we need to get a grip of the horse, take charge of the reins and calm the horse.   In calmness, everything makes sense.  Trust me, it's what's got me through.  Think. Don't react.  My fear is under control but it is there, just need to keep it in check.   GOod luck, and I will be on here often now.

M

Hi. Your reply says it all. You are strong and definitely ready to deal with what lies ahead. I hope others see your words of positivity, as it will give them the strength to confront their own journeys. 
It’s great that you can work from home. With the increase in Covid infections, it’s the safest place to be. We are on the extremely critically vulnerable list.
I work in a school, but I am glad that I have remained at home for now. My son is in year 7 at school and at first it was a challenge, deciding to let him go back last September.I didn’t want him to suffer by remaining at home, although we didn’t have a lot of choice at the time. That being said, I believe that sending them back in January will be more difficult this time around.

Fortunately I have had time to build my immune system back up, but anyone who is having treatment, like yourself, has to be very careful. My son was sent home to isolate on two occasions because someone in his class tested positive. The first time I was still undergoing treatment which did cause some panic!
 I only go out for walks and avoid any shops or crowded places and so really the only way I would be exposed to Covid, would be via my son contracting it at school, which is a concern.

Stay safe and wishing you all the best with your treatment.