Hi Emma, thanks for posting. I was diagnosed with Chronic Lymphocytic Leukaemia in 2003 at 53yrs old and I have been lucky enough to be on watch and wait ever since. I suffer with fatigue after I overdo it emotionally or physically, It can come on immediately or after 24-48hrs. 6 yrs ago I got shingles, I believe triggered by a stressful house move, I do not deal with what personally stresses me well post diagnosis. I also have severe osteoporosis in my back and the shingles started there and followed the nerves down my left leg. 6 yrs later I still have the shingles, to a much lesser degree in that leg, and tingling toes in both feet. The consultant says my compromised immune system means I cannot get rid of the shingles. As soon as I overdo it, mentally, physically or emotionally the shingles can flare up all over my body I hope this is useful to you and I look forward to hearing from others?
Welcome Emma.There are quite a lot of posts on here about fatigue. When you are familiar with the forum have a look at the section about life after treatment. If there is something that is not covered we would love to hear from you. Perhaps you would like to start a new thread?
Hi Josh
Thank you for your e mail . I was diagnosed with Non-Hodgkin lymphoma (NHL) nearly 2 years ago , follicular stage 3. I was on watch and wait but was offered 4 infusions of Rituximab and finished my treatment in May .
Apart from a few intial cough - flu type infections I was well and thought my lumps had decreased . In a follow up pet 3 months later lots of my original lymph nodes had shrunk . But I had 2 troublesome nodes in my groin area that have increased slightly in size and reactive , and have constantly caused me groin and back pain.
I am having a follow up pet tomorrow after a long course of antibiotics to rule out any infection .
I feel that there is probably no change as I can still feel the nodes and still in pain . They are both approx 2.5 cms in size .
I also feel my armpits are getting lumpy again and although not having any obvious bad secondary symptoms have had a few sweats .
My consultant has advised he will do a needle biopsy if there is no change , and we talked about options and he said at the last appt , he felt there was prob about 10% chance it may be transforming but biopsy would confirm if it was required .
I obviously hope that this isnât the case ,but can you give me any advice please if this does happen ? I thought the Rituximab would have continued to work ,as it initially improved things , so obviously surprised that it may not have continued to decrease the nodes ?
I have my follow up on Monday week and have prepared myself for the fact that I may have biopsy . Would I have treatment for nodes if itâs not transformed ? I do suffer a lot of pain from that area ,but of course do not want R CHOP unless I have to .
Any advice of this would be grateful .
Many thanks
Jo lyons
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On 15 Oct 2018, at 11:21, Joshua Poncil bloodwise@discoursemail.com wrote:
JoshuaBloodwise
Bloodwise StaffOctober 15Hello @Jo20,
Thank you very much for creating an account and joining the Bloodwise online community forum. We want the forum to be a safe, inclusive and supportive space for every member, so please do share as much or as little as you feel comfortable with our community.
To start you off, you are more than welcome to introduce yourself to our fellow members so they can get to know you a little better. You can find a link to the â introduce yourselfâ section HERE.
My role is the Online Community & Services Officer here at Bloodwise, so please do get in touch at any time if you have any questions for myself and the team either about the community or about any element of your blood cancer experience. You contact myself through the online forum messaging service or call our support line at 0808 2080 888 Mon-Fri 10am-4pm Wed 10am-1pm or contact support@bloodwise.org.uk and weâll be happy to help.
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Hi Jo. I am afraid that I am not able to give you any help in regards to medical advice, but just wanted to wish you luck and a successful consultation next week. Hopefully things will soon become clearer and a treatment plan put in place
Hi there
Thank you for your kind reply . Yes hopefully I will got good news . Although I have had the Rituximab itâs quite hard to get information on how it works long term , itâs success etc .
I hope all is well for you too.
Jo
Hi Jo, welcome, I also cannot help with medical questions but I know I have to write a list of questions, fears etc for my medical team otherwise I forget everything when I see them. Please do let us know how you get on as we are all here to support you?
Hello forum members!
I would like you everyone to welcome the newest members of the week, who are affected by blood cancer in some way, shape, or form. Please welcome the following;
@Tmay
@Ks70
@Minty
@plummy
@Penny1
@Lauren
@Catkin
@Jo20
@mikekav
@Gazh200780
Please welcome them with open arms and say a friendly âHelloâ to them. Also new members, please feel free to share your story to the online community and start having some conversations with one another. Once again, thank you so much for joining the Online Community Forum and remember, you are in a safe space to share anything you would like
Hi Jo and welcome,
Have you tried asking your consultant and CNS? Whenever I was unclear on anything I would ask them, no matter how many times I needed to before I felt happy with the answer. Donât be afraid to keep questioning and I know it may seem obvious but take notes and maybe have your concerns written down before you go in?
My CNS (Clinical Nurse Specialist) was very knowlegable and they are well qualified and attend all of the Multi Disciplinary Team meetings on your case so a good source of information. I could and still can email mine and then she would answer or speak to my consultant and relay the information to me.
Hope this helps
Welcome to you all and I look forward to hearing more about you all. I find this site is very supportive and informative
Thank you so much for your kind advice . I have a follow up next Monday so I will def remember to take notes with me .
I hope youâre well xxx
Hello Everyone. My name is Mo and my husband has Myelofibrosis which transformed from Essential Thrombocythemia. Anyone had any dealings with this horrid disease?
Hi Jo, I always get very apprehensive before medical appointments, so please do let us all know how you are feeling and how your follow up next Monday goes?
Hi Mo, No, I havenât got any medical knowledge, but what I have found is that what we seem to share is the fears, thoughts and feelings. Donât forget carers are the unsung heroes and this community forum is here for you to share how you are, your fears and what you are thinking and feeling so please keep posting,
Youâre welcome,
Maybe also make notes during and after too, donât know about you but my memory isnât great sometimes!
Iâm doing well thank you, take care
Hi Erica
Thank you for your kind message . Yes I find it very hard - I have 3 month check ups and feel I get 2 out of every 3 being able to manage and sometimes even forget ! I always feel so annoyed with myself that it manages to creep up and take over , but I know itâs normal and have started to learn to accept it and not beat myself up - watch and wait is very hard to explain and deal with .
But I know I canât change the outcome , so have everything crossed for a good outcome 
I hope your well and thank you for your support xxx
Hi Mo, like Erica I have no medical knowledge or experience of your husbandâs blood cancer. Have you found anything on Blood Cancer Connect, which gethers relevant information about blood cancer from a network of trusted cancer charities and organisations and displays it in one place. This is the link if you think it may be useful www.bloodcancerconnect.org.uk
Hello @bloomfieldm2,
Thank you for sharing your husbandâs experience with Essential Thrombocythaemia (ET). how are you feeling? I am so sorry to hear about his diagnosis and it sounds like you are trying to find others who are in a similar situation with the condition. Ifyou havent seen it already, you might find it useful to look thought our webpages on what is Essential Thrombocythaemia (ET), or speak to our support line team. The number is located about and you can send us an email. You mentioned a little bit about your husbandâs diagnosis, would you feel comfortable sharing your experience with the disease here?
Hello forum members!
I would like you everyone to welcome the newest members of the week, who are affected by blood cancer in some way, shape, or form. Please welcome the following;
@Eurika
@Mary
@MissChop
@Bella
@Tilly
@parkrunmark
@ynysbwl2
@chrisn
Please welcome them with open arms and say a friendly âHelloâ to them. Also new members, please feel free to share your story to the online community and start having some conversations with one another. Once again, thank you so much for joining the Online Community Forum and remember, you are in a safe space to share anything you would like
Hi Everyone
I am 61 years old living in sunny West Wales
I was diagnosed with AML on 27th April this year after routine GP blood test after feeling unwell for a few days. I was rushed into Cardiff UHW hospital that evening feeling dazed and confused.
Chemo was supposed to start the next day but I developed fungal pneumonia and could not be treated due to temperatures spiking continuosly.
Finally after 3 weeks my treatment started, I was on the AML 18 trial , 10 days of chemo to begin with which I coped fairly well with and was sent home 2 days after finishing. Unfortunately within 2 days my fungal infection returned with avengeance and I spent another 2 weeks in my local hospital.
After being discharged for the second time I had a lovely month at home recovering and putting the weight I had lost back on !!
My BMB also showed I had achieved complete remission which was great news.
I returned to Cardiff in July for my second course of chemo {8 days},followed by a further 5 day course at the end of August. I came home on the 5th of September and the waiting game began for my bloods to recover ! On the 1st of October my neutrophils had finally recovered enough to go back for my 4th BMB which showed I am in remission.
I am NPM1 mutation and have been advised no transplant is neccesary, I will be monitered closely and if there are signs of relapse I will go for transplant before relapse actually happens.
At the moment I am feeling really well and getting stronger every day, I actually ran 2 miles yesterday without stopping !! Hopefully going back to work next week too on a phased return.
The fear of relapse keeps popping up but I am trying to enjoy lifes simple pleasures every day.
Mark
Hi Mark, thanks for introducing yourself in this post. I guess by your name above you have always been an active person and it sounds as if you have been getting back into running. In very different circumstances, I found going back to work quite fatiguing emotionally and physically. We all found it very difficult, we just did not know how to be around each other. Some people came up with their head at an angle and asked âhow are you?â, others avoided eye contact and me. My bosses had never had to deal with such a situation and started holding meetings without me and taking the proactive roles away from me. I was looking at their behaviours when I was still on high alert, fearful, anxious and in shock at my diagnosis. Luckily I had accrued a lot of leave and flexi time and I just worked, ran a house and slept for 5 yrs till my job was made redundant, a win-win situation. But sad as I had been very proud of my department and itâs achievements and I had loved my job. However this was 14 yrs ago and I believe a lot has changed since then and a phased return sounds good to me. What I would say is honest communication is the key, at the time we all struggled and miscommunicated. You mention your fear of relapse, which sounds so natural to me and I believe takes a long while to start to subside, it never goes away and whizzes back when medical appointments are due. Please let us know how you find going back to work?