Follicular lymphoma

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Bump in the road

Jenko1979
Posted by

hey all,

well, here I was bumbling along very nicely following my remission in March and then I hit a bump in the road. 

Was due my 4th maintenance treatment tomorrow but my blood count has come back too low to have it which is disappointing.

I’ll now have to take daily injections for a week in the aim to get them back up and hopefully have my treatment in 2 weeks time. That’s best case.

its all come at a really bad time as well as I quit my job to seek a new opportunity that I start in December which now may cause issues with all my private healthcare because of the delays and timings mean I may not have any bupa cover at the time my next treatment is due. Not sure what that means now, but will hope and pray I can get everything I need back on the nhs or be able to sort something out.

just when you think you can forget about this disease for many years, it comes back to bite...

i hope everyone else is doing well.

regards

Paul 

johnr
Posted by

Hi Paul sorry to read about your ups and downs, try to see it as a blip and hopefully all will sort itself out and treatment will continue and trying to put this into context it may be just one treatment that ends up out of sync and worst case I am sure you will be able to transfer to an NHS haematologist and keep things going. Also the will be a residual amount of the drugs in your system as it takes quite a while for the blood to cleanse itself of all the drugs, so they will continue to do what they do.

So whilst it may be a pain it should prove to be a bearable one with a bit of luck.

hope you get sorted and good luck with the new job

John 

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

Hi Paul, sorry to hear about all the complications you are facing.

I do hope you find a positive way forward with regards to your Bupa cover and all the best with your new job.

Yes, you think that the further along the toad you get that things would settle down but as you have experienced, this can often not be the case.

Keep your eye on the goal.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Joncol
Posted by

Hi Paul 

sorry to hear about your bump in the road. I have private cover but when I was diagnosed by the nhs the haematologist said to stick with the nhs as they have more ‘ammunition’ available! I have switched between nhs and private for a previous health issue and it didn’t cause any problems at all. I would speak to your consultant as he may also work for the nhs or ask him to refer you to another consultant who does.

fingers crossed that your blood levels are shortly ok and you can have your maintenance 

Jane
Jenko1979
Posted by

Thanks Jane,

yeah, it’s just logistics at which point to switch over but I think it’s doable. The price of some of these drugs I wouldn’t want to get the timing wrong and end up having to foot a hefty bill.

my bloods we’re very low and I found out yesterday that o was in the very serious category with high risk of fatal infection. (Abs neutrophils of 0.17). Maybe it wasn’t the best weekend to have been swimming  in center parcs, lol (but obviously I didn’t know that at the time).

anyway, hopefully on the mend now and will get my next maintenance treatment in a few weeks.

thanks all

Paul 

Joncol
Posted by

Hi Paul

perhaps keep away from Spurs games too!! Hope you improve quickly

Jane
Jenko1979
Posted by

Haha, I have been. But mainly because we’re playing so badly :0)

Paul 

Nix67
Posted by

Hi Paul,

Hope that  things have stabilised now and you are back on the right track. My blood count came back this week as too low so I guess it’s a common problem

I am now on tablets to try and sort the problem out.

Nicky 

Jenko1979
Posted by

Hi Nicky,

unfortunately they are still too low for my next maintenance treatment so it was delayed again by another week (3 weeks now in total).

more blood tests tomorrow and hopefully if all OK then I’ll have the next maintenance this week.

paul

Paul 

Cecren
Posted by

Good luck Paul!  Hope those injections do their stuff smartish.  I guess it's gamma globulin...?

Cecren

Nix67
Posted by

Fingers crossed that they have improved.

Nix67
Posted by

Hi Paul,

Bummer that your bloods are still low but pleased that you are able to go to Rome. Hope it’s a holiday and not work .........

Glad your consultant doesn’t seem too worried. Do you feel okay in yourself or can you tell the difference. What are they doing to improve the results and have you been advised to do anything any different.

My bloods are also low so just wondering if they are telling you anything different to me. At the moment I have just been prescribed tablets and like you, my haematologist doesn’t seem too worried.

Nicky 

BedrockFred
Posted by

Hi all a bump in the road for me too, bloods are good but I have a bad chest infection so my maintenance treatment was postponed the consultant has prescribed strong antibiotics 1000 mg three times a day for a week and he will see me a week on Friday and decide the next course of action

Hope all you guys and gals are doing well good luck all

Together we are stronger
Thehighlander
Posted by

Its that time of the year....... expect the unexpected......... all power to our immune system.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Jenko1979
Posted by

Hi Nicky,

my bloods dropped very low again the day before we were due to fly to Rome. Ordinarily I should be back on the injections but there was not time to do this before our flight.

i took the decision to fly out here anyway and took some antibiotics from the moment I found out about the bloods (my consultant advised this and had already prescribed them in case I got ill on holiday.

i feel fine in myself, but I guess it’s just a risk if I do catch anything.

the consultant said this could go on for months but I will only have a few more weeks until the remaining 8 maintenance treatments will be abandoned. This is a huge blow as it’s been proven that maintenance does lengthen remission times so the thought of this coming back much sooner than I originally expected is a bit of a bummer.

i am back in on Monday for what is probably the penultimate blood test that can provide the results needed to get back on track.

the consultant said if the low bloods stay for 4 months they’ll do a bone marrow biopsy. It’s been 5 weeks to date.

sorry to hear you have been having blood issues to Nicky 

Paul