Just starting treatment - planning ahead

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It's been 6 months since I was diagnosed. Lots of test run including 2 biopsys. Confirmed folicular lymphoma about 2 months ago and moved to treatment as my pallette count was sitting around 80-90. No other symptoms other than some obvious (but not overly large) nodes. Bone marrow infiltrated so was told stage 4. So far, so scary.

Just had my first 2 days of O-mab and Bendo combination. No significant reactions although my heart rate was low at 44 today. Notionally I'm pretty solid at 50-52. So not terrible but the cancer staff are on the look out for anything indicative of problems. Blood pressure also a bit low for me but seemed to recover after the infusion. 

Now it's a waiting game. Get my next O-Mab next Tuesday then a 3rd the following Tuesday. Then we go to the usual monthly Benzo+O-Mab cycle.

Things moved very quickly from diagnosis to treatment but I'm hoping this knocks the cancer back significantly so there's time to see about improving treatments. I'm a spritly 54 so would really like to get time back to see the grandkids grow up a bit. But now need to think of the practicalities.

Has anyone thought about things like free prescriptions, blue badge etc. I'm told I am eligible for both. Any advice on how to apply?

Other item is a will and trust to put the marital assets into to try to protect any inheritance for the kids. Again, anyone any experience?

Regards

Cormac

  • Hi  sounds like things are moving forward.

    Do keep in mind that Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

    Staging in Lymphomas identifies 1) Where the Lymphoma is presenting in the body (it can be anywhere) 2) What is the best treatment approach and best treatment type for your presentation and 3) How long your treatment needs to be.

    Practical things need to be done……cancer or no cancer a will should always be in place so go talk with your solicitor.

    You may well be able to access various benefit's…. I was surprised as to what I could get so call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00.

    This service provides practical information, benefits/financial guidance/review…….. including advice of setting up a will.

    As for Free Prescriptions talk with your GP and they will complete a form for this to be put in place…… in Scotland our prescriptions are free anyway.

    I was told I could have a Blue Badge as I ended up using waking aids following my second Stem Cell Trabsplsnt but my physiotherapist said no, as my recovery would take much longer abd she was spot in.

    I am not sure who you talk with about a Blue Badge as each country indeed Health Board has different assessment rules…… ask at your GP surgery and if they can’t help you ask the question on the Macmillan Helpline as they can access this type of information.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike

    Your very good to reply to all these messages and I appreciate you taking the time again here.

    Yeah, words like pallaitive care etc on my treatment forms are a bit scary but then you realise that can go on for years. It's not end of life but making sure affairs are in order is a good idea regardless.

    Thanks for the Macmillan contact details. I'll give them a shout tomorrow. Still feeling pretty rubbish after the chemo yesterday and heart rate still very low. Hoping that will resolve itself today. Decent weather down south so a gentle walk sounds like all I'll get up to today :-)

    Regards

    Cormac

  • I think it’s important to remember that although your FL….. like my type of Low Grade NHL is seen as incurable…… they are very treatable…… some medics use the word palliative, but this word can be confusing abd often wrongly applied.

    When my consultant said that I would most likely live with my NHL rather die from it…… he said that it’s like having a chronic condition like say type 2 diabetes……. They are on treatment for life…… so could their treatment be seen as palliative?

    It’s important to focus on the fact that a very high percentage of people with FL ku I’ve long and happy lives having treatment from time to time.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike

    That's very much my hope now. I'm starting to get an appreciation of how tough chemo will be, but I take a lot of comfort from stories on here that show there is light at the end of the tunnel.

    Thanks again for being a voice of reassurance. 

    Cormac 

  • As to how tough chemo can be….. we could line up 100 people with the exact same Lymphoma in the same treatment and get 100 different stories.

    I had R-EPOCH (this us a full on treatment) back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........

    I had 30 mins of my very last chemo leading up to my second Stem Cell Transplant and it floored me…… there is no rhyme or reason to this.

    Expect the best and deal with the rest.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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