Many thanks to you and Erica for responding to me. Iām not at my best at the moment so need everything to be super simple and straightforward! I will try to follow your advice and join a conversation as I would welcome feedback about my complicated medication situation. I might also contact your support line team.
Thanks again and warm wishes to all.
Marilyn
Thank you Anna,
My iPad is being repairedā and find it difficult to work with my phone. Will be back when it is fixed.
Regards
Colette
Sent from my BlackBerry 10 smartphone.
Hi. Iām Richard, 55, diagnosed stage two NHL three years ago. Two biopsies, one course Rituximab only, w and w.
Itās good to talk! One thing Iād like to know more about - I understand the biopsies have been done simply to assess staging, but the fact is following the removal of the tumour on one side of the groin, there has been no regrowth of any kind, confirmed by scans. It feels so much better to have had the tumour removed - my hobby is running - and I donāt really understand why the tumour isnāt surgically removed on the other side too, but my oncologist is very reluctant to go down that path. Has anyone else have a similar experience?
In February 2016 I was diagnosed with ALL (Philadelphia negative) after being unwell with flu and chest infectionsā¦ this cane as a complete and utter shock to me as my brother had died aged 22 from ALL some 30 years before and I could not believe this could happen to us again.
After 3 weeks in hospital receiving platelets, transfusions and starting steroids and chemo (signed up to uk14 trial) I was discharged Home followed by phase 1 of treatment which was weekly chemo and steroids. After a 2 week break I began phase 2 which was the hardest, daily chemo and weekly lumbar punctures and also had a Hickman line inserted. At this point I was informed I was in remission and would need a stem cell transplant. My brother proves negative so a donor was being sought.
In May 2016 I began phase the final phase of treatment prior to my transplant which was 2 separate admissions into hospital for an iv chemo. Unfortunately at this point I declined a nasty infection from my Hickman line which required another week in hospital for iv antibiotics.
In June I also received the news a donor from Germany had been found (100%) match! I was admitted into the queen Elizabeth hospital in Birmingham in July 2016 for my stem cell transplant. This was very difficult, firstly to be away from my children and husband yet again for 3 weeks and secondly because I felt so well at this point and knew they were going to have to make me feel very unwell in order to get me better for the long course.
I underwent kidney and respiratory tests to check I was healthy enough to have the transplant then one week of chemo and other medication to prepare me for the transplant. On the 12rh of July my donor cells were flown in from Germany and at 9āpm I received my cells via an iv drip, to be honest this was an anti climax! It was no different from any other transfusion except I knew this one could be the start of my cure!
The day after my transplant was the worst with nausea and exhaustion I had never felt before! This was the only one and only day I couldnāt get up and shower, I just had to sleep! Following this I gradually improved and on day 14 post transplant my neutrophils suddenly kicked in and I was allowed home!
I then went back to clinic weekly for bloods and also 3 monthly bone marrow biopsies and lumbar punctures, my strength gradually returned and I felt I was finally getting āmy lifeāāback again which had been rudely and abuptly taken from me some 12 months prior.
In September 2016 I developed graft versus host disease with a rash, terrible itching, hair loss (again) flaking and red skin and severe chills but after 2 weeks of steroids this improved and by December 2016 I felt great. My energy levels and hair weee coming back and I started to feel really well.
In March 2017 I unfortunately picked up chicken pox and shingles but again after medication recovered well. In April I went to Tenerife to renew my wedding vows and May 2017 Disneyland in Paris. We also then had a lovely summer spent at our home in Warwickshire and our caravan in Stratford upon Avon.
In October 2017 a few weeks after my 3 monthly bone marrow biopsy I received a call to attend clinic the next day. As a medical secretary I know being called in the next day is never good and I was right! I was called in and informed my acute leukaemia was back and I would need to go into hospital the next week for a new treatmentā¦ we were absolutely devastated and in complete shock as I felt so well and my bloods were so goodā¦ my consultant was also confused and asked me to have another bone marrow biopsy the next day to be sure. I was told these tests are never wrong but something didnāt feel rightā¦ we cancelled our planned holiday we were due to go on the next week and broke it to our 3 children again that my blood was poorly and yet again I would be away from them for another month. This was the hardest point out of the last 2 years and I hit an all time low, I felt I could no longer go on and had no fight left in me to keep goingā¦ luckily I have a great GP who got me on anti depressants immediately and referred me for counselling.
I returned to clinix a week later expecting to be told I would be admitted that day for treatment only to be told a mistake had been made and in fact I was in remissionā¦ I know I should have been jumping for joy but I was shell shocked so now again I had to get my head round I was now in remission. I was told to go home and not worry and rheysnsee me again in 3 my months.
Two weeks later I was called into clinic again only to be told on further testing a gene had been picked up, my transplant was failing and there was some kind of slow growing bone marrow cancer but they couldnāt be sure what it was. The following day I underwent her another painful bone marrow biopsy and after a frantic two weeks of worrying was told they had picked up a form of chronic myeloid leukaemia and would apply for funding to see if I could be prescribed the target therapy imatinib. After waiting a month for the decision we received the news I could have the treatment and have been on it now for 6 months. I have been told this is a treatment not a cure and the cure will be further donor cells which will be given if and when Iām in remission again. I go for a bone marrow biopsy in September to find out if I am in remission and if I am my top up donor cells will be given in October, my consultant is fairly hopeful I am in remission as my bloods are good but I wonāt allow myself to get excited or hopeful any more as I vantnout myself through the disappointment again.
However I feel great, I live every day to the full, Iāve just come back from a great week camping in Cornwall and WILL NOT allow this retched disease to control me or stop me from doing anything, it can do one!!
I eat well, I take daily supplements, exercise and drink fruit smoothies daily packed with vitamins and live my life as normally as possibleā¦ keep fighting we can do this! Xxxx
Hello everyone My name is Fiona im 41 from Doncaster. I was diagnosed with Follicular non hodgkin lymphoma on 15th September 2017. Im on w&w. I havenāt read into the disease as yet (too scared to) but also still trying to come to terms with having it. Hopefully I can gain information from my fellow warriors.
Hello @RichardR ,
Thank you for sharing your experience with NHL with us. It sounds as though you had a difficult time over the last three years however, I am pleased though that your tumour hasnāt shown any signs of regrowth and that you are feeling much better. Weād always encourage you to talk to your healthcare team for any medical concerns you may have as they are best equipped to make decisions based on your individual healthcare needs. Youāve raised a really interesting discussion point though, so I wonder if youād like to start a topic conversation within the āliving with and after blood cancerāā section of the forum to see if anyone else has had a similar experience?. Richard you also said you are a runner. We also have topic threads about hobbies and what helps you cope after your diagnosis. Feel free to join and start chatting!
Thanks Joshua, I will do that.
Hello. Iām Rachel. My 16 year old son was diagnosed with acute lymphoblastic leukaemia on May 31st 2017, in the middle of his GCSEs. He is under the Queen Elizabeth Hospital Birmingham and doing remarkably well, heās on his maintenance until October 2020.
Iāve only just come across this forum, weāve made some truly wonderful friends along the way, but weāve lost some tooā¦the most recent being a beautiful young lady that was a tremendous help to us when my son was first diagnosed. She had the same as him but was a couple of months ahead in treatment. Itās affected me in a way I wasnāt expecting, knowing it could so easily be us.
Thankyou for taking time to read this.
Hello, My partner Chris was diagnosed with Mantle Cell Lymphoma January 2016. He went through chemotherapy and had stem cell transplant, November 2016 we were told he was in remission which was great news. Unfortunately since then he has suffered a blood clot, double pneumonia and sepsis, and survived them all. In May this year he started to feel generally unwell, then beginning of June we were told the cancer had returned. So now he is on a drugs trial, he is doing amazingly well on it and at the moment we are enjoying life because as everyone knows you donāt know what tomorrow will bring.
Hello, Iām Linda, 56 from Worcester UK. I was diagnosed with Essential Thrombocythemia January 2017, big shock took me a good while to tell some family and friends. I started on Hydroxycarbamide, within a month was struggling with work all I wanted to do was sleep. Consultant changed my meds to Anagrelide and aspirin, was only on that for 3 weeks suffered with terrible palpations. Continued to take aspirin but was but on Pegasys which was working my platelets started to lower, originally were 900 lowered to 500. In July 2017 I had a bad reaction with hives all over my body was rushed into hospital on a number of occasions swelling of the eyes lips, had to use an epipen on one occasion. August spent a week in hospital was taken off Pegasy and aspirin. I was put on clopidogrel and referred to immunology. More blood test I found out my vitamin d was very low, consultant was shocked I was able to walk or do anything. Iām now taking vitamin d supplements. Seen every month by haematology in April 2018, consultant decided to put me back on Hydroxycarbamide 500mg Monday to Fridayā¦ Managed to cope with that. In July consultant wanted to increase the dose to 2 Hydroxycarbamide a day Monday to Friday, thatās when I started to struggle again. See consultant 2 weeks ago my platelets have gone down to 386, sheās put me back to 1 tablet a day Monday to Friday, doesnāt want to see my until October unless any problems. I am coping with this, just canāt push myself how I use to.
Hi Richard, I cannot answer your question, but I wanted to welcome you to our community forum. I find it very supportive and I hope you will too, there are so many varied topics and information on it. I find being part of somewhere feels comforting, and although we are all in unique situations it is the thoughts and feelings we have in common. There is also the Bloodwise Freephone Support Line on 0808 2080 888 Mon-Fri 10am-4pm if you would like to talk to someone at Bloodwise.
Hi Linda, welcome to the community forum, Gosh you have gone through so much in the last 18 mths, I am not surprised you and your body are exhausted and fatigued, I was still in shock at that point in time. I have Chronic Lymphocytic Leukaemia, but I really related to a lot of your feelings and I remember just struggling with work and running a house and just wanting to sleep, which I did the rest of the time. I am also on Vit D supplements. I hope you feel better on these meds. Be kind to yourself and take it steady and if you would like to talk to someone on the Bloodwise Freephone Support Line on 0808 2080 888 Mon-Fri 10am - 4pm they are there for you and I am finding this community forum has some really interesting posts on it and feels supportive.
Hi Jules, what a complete rollercoaster you have been on over the last 2 1/2 yrs, I cannot imagine how your emotions have coped. It must have been so tough on you on your family. I really liked the varied holidays you have been on and you cannot beat Cornwall. I am so glad you have joined this community forum and I hope you find the very varied posts interesting and informative. Donāt forget if you would like to talk to someone at Bloodwise their Freephone Support Line is available on 0808 2080 888 Mon-Fri, 10am-4pm. Take lots of care of yourself.
Hi Fiona, I am so glad you have joined our community forum and I hope you find it as informative, varied and supportive as I do. I can remember still being in shock and trying to come to terms with my diagnosis well over a year after my diagnosis. If you would like to talk to someone at Bloodwise they are available on their Freephone Support Line on 0808 2080 888 Mon - Fri, 10am-4pm on 0808 2080 888. A diagnosis like we have had is scary, but as you say we are also warriors, take lots of care.
Thank you Erica, thatās appreciated.
Hi Rachel, I am so glad you have joined our community forum and I hope you find it varied, informative and supportive. Donāt forget if you would like to speak to someone on the Bloodwise Support line they are available on 0808 2080 888 Mon - Fri 10am-4pm. I know how surprised I have been that things can affect me so much emotionally especially when I relate to the person or situation, I do not think that will ever go away, it is natural. Take lots of care of yourselves and keep posting.
Hi, thank you for joining this community forum, I hope you find it as varied, informative and supportive as I do. You and Chris have gone through a lot in the last 2 1/2 yrs and I would have thought you are both exhausted and your emotions all over the place, I know I was still in shock at that time. If you feel the need to talk to someone at Bloodwise their Freephone Support Line on 0808 2080 888 is available Mon - Fri 10am-4pm. Yes, enjoy life daily and take lots of care of yourselves and keep posting.
Hi Erica,
Thank you for your kind words. It is so nice to know there is support
Okā¦ look forward to hearing from you again soon!! BTW my ipad needs a new battery but I keep putting it off!
Anna I thought mine was just a new cable but 3 weeks later itās a new port! And still no return date! Wait until iSmash ask for online comments on service! Colette
Sent from my BlackBerry 10 smartphone.