Hi @junior, how are you today?
Ahh thatâs not a problem! Iâm the same I tend only to log in and log on when I receive notifications. Would be great if we could update each other on our progress.
Yes 36 sessions of chemo/Rituximab. It seems a lifetime ago now. It was a session once a week for 4 weeks with 8 weeks recovery so was a long process. Some weeks I felt ok, others were a real struggle especially the more cycles I had. It was 8 cycles altogether.
Once treatment finished I had follow ups with my consultant every 3 months with bloods taken each time. I have recently changed to 6 monthly visits. I am due for a follow up in July providing Iâm able to visit the hospital.
Anyway Patricia please stay safe, stay well and look forward to hearing from you soon.
Sara x
1 Like
Hi junior this is amazing to hear youâve been on watch and wait for 8 years with no treatment. So encouraging!
Stay safe and well.
Sara x
1 Like
Hi @sajdee I hope you are well! itâs lovely to hear from you 
I hope your follow-ups have been going okay?
2 Likes
Hi Erica
Iâm OK. Just shielding/shopping frustrations!
Patricia
1 Like
I know what you mean !!! Although I am finding Sainsburys on line delivery slots are getting easier and less substitutions and no shows, although I think the products and ranges are getting smaller. It does me good just to air my frustrations !!!
Hi @Erica thatâs really encouraging to hear! but so sorry to hear that you feel havenât got as much range and variety as you would have hoped for. Do you find ordering from more than one place helpful at all?
1 Like
Hi @SuBloodcancerUK, I could use another on line grocery supplier but we are lucky enough to be near a town and my husband does go out to the shops. Also, how important is it and perhaps it makes me âlook outside the boxâ.
Hi @Erica sure, as you say, the most reassuring thing to hear is that you have been able to get access to food and eat well. Itâs so good to hear that you are conveniently close to a town, and that your husband is able to support you both 
1 Like
Hi All
Just to say that for the first time there was an improvement in my blood test results this time, hurrah. Due to that my Consultant said I could go out for walks and take my rubbish out myself again! hurrah. This is really important as I live in a small flat without a garden. All other restrictions still apply, but some freedom is like the sugar that helps the medicine go down.
He also explained a bit more about indicators he would look for before I went onto Ibrutinib [still quite a way off] and that I would start on a low dose.
So all in all have more hope for the future now. Patricia
2 Likes
Hi @Patricia, I had to chuckle that you, and we, have got to the stage of saying and feeling âhurrahâ at the thought of putting the rubbish out. I was really elated at getting an online delivery slot for next week. I am so glad there was an improvement in your blood test results and that is a real âhurrayâ feeling. Take care, stay safe and keep posting.
1 Like
@Patricia Oh Patricia, thatâs such good news about your blood test results! And really glad to hear that your consultant was able to give you more clarity and give you the ok for going out for walks. How have you found your walks?
1 Like
Fantastic news Patricia ⌠little positive steps as they say!!!
Stay well and stay safe xxxx
3 Likes
Hello just joined this forum, my partner has WM Lymphoma. He had chemo in 2017 good partial response. In summer 2019 IgM rising, MRI revealed mass on spine. Immediately put on Ibrutinub and itâs been like a wonder drug! IgM down to 6 lowest itâs ever been since being diagnosed, no side effects allowing him to work full time. It is a game changer so hope other people can feel confident if it is recommended.
4 Likes
Welcome to the forum @AnneB. I am pleased that your partner seems to be reacting positively to his treatment, and I am sure your post will give hope to others. I hope that you find some topics that will be of use to you and your partner on the forum, and feel free to ask any questionsâŚif you thought it, someone else will probably have experience of it too. Best wishes to you and your partner
2 Likes
Hi @AnneB, I am so glad that you have found our community forum, it is here for both of you. Your husband seems to have found the right treatment for you. How has your relationship been affected by his diagnosis, my husband doesnât do emotions or like to talk about things so I have had to find my emotional support through my special friends and this forum has been brilliant.
1 Like
My partner is similar, he pretends it isnât happening and just gets on with his life. I have found it hard as I worry and wonder what the future holds for us
1 Like
@AnneB, I think it is hard but nobody knows what the future holds for anyone. Perhaps you, as I, might need this forum to share what is really going on for us when we cannot with our nearest and dearest. My husband makes a brilliant evening hot chocolate. Also you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk if you need to.
hello. just seen this. My husband has WM since 2012 and had 6 rounds of Rutiximab etc when gave him a good remission but last year he relapsed and was put on Ibrutinib. Everyone is different of course but I have to say he had very few problems (one day of diarrhoea, a couple of weeks with little sleep because all of a sudden soo much energy) then it settled down. He went back to work and has been stable with an IgM of less than 1 for nearly a year
So donât be too worried. As I say everyone is different but hopefully this helps a little bit to calm your nerves. Your consultant will see you through. good luck.
2 Likes
Hi @Parrotperson, a great big welcome, I am glad you saw this post. It shows our forum is here as much for you as your husband. It must have been an up and down 8 years. How has it been for you since your husband was diagnosed?
2 Likes