Jules43's blog

Stem Cell Transplant

2011-09-18T20:29:44Z

Hi everyone, just thought I would let you know that a stem cell donor has been found for my husband and it appears to be a 100% match! The next chapter of our journey begins on 20th October with the pre-transplant chemo in order to kill all his own stem cells. The donor cells will be transplanted on Thursday 27th October a big day!!!!! wanted to share this news with you all. Much love, Julia xxxx

Eshap treatment Day 2

2011-08-10T06:38:40Z

Well not a lot happened yesterday! We thought that on entering the hospital bloods would be taken and then he would be thrown straight into his chemo - no such luck. We were not warned about having 2 tests prior to bloods, prior to chemo so yesterday was spent waiting endlessly for a kidney function test to take place and bloods and then a heart test which now has to take place at 9.30am this morning! Its is not like we caught them unawares, theyve known he was coming in yesterday for a month so they couldve booked these tests. However, it wasnt done and we spent a day just waiting....... I managed to bring him home last night however which was a bonus that I was thankful for. Back to it today though. The psychologist popped into his room yesterday "to have a chat" as soon as I saw her badge I just melted. I dont know what came over me but I just started crying and she was looking at me like I had lost the plot. Perhaps I had, who knows. Everything that I had held inside me over the last few weeks just flowed in the form of tears. I am not even the patient my husband is. He said, I dont need you just yet but I think my wife might! With that, she handed me her card and said "call me". Just put me in a padded room and I can let it all hang out.!

Well, we are off to the hospital now so I shall blog you all later on todays events. Keep your fingers crossed that he gets the drugs today - thats one day closer to him coming home.

Bye for now, much love to you all,

Julia xxxx

Eshap - chemo day one

2011-08-09T06:19:34Z

9th August 2011 - today we go into hospital for the first day of a five day treatment of ESHAP chemo. I will let you know how it goes. A stem cell donor is still being searched for my husband.....

ESHAP - chemo

2011-08-01T18:30:59Z

HI, is there anyone out their in Mac Land that has had experience of this type of chemotherapy. My husband is about to have it next Tuesday and wants to know what if anything to expect. All views and opinions will be greatly received.

Julia x

Not a Match!

2011-07-24T07:18:18Z

Found out yesterday that my husbands sister is not a stem cell match for him! He took in quite badly actually - more panicky than anything, saying things like ... what if they cant find anyone.

I guess we move to the donor register now! Chemo begins 9th August

xxxx

We are now on the Stem Cell Transplant journey!

2011-07-08T07:05:07Z

Well, we've had the meeting with the Consultant and the verdict is in. My husband has to have a stem cell transplant using donor cells. His sister is being tested for a match so I will update when I have news on that front and prior to that he has made the appointment to go in and have at least one sharp shot of chemo prior to the transplant. The chemo he is receiving is ESHAP and he has to stay in hospital for 5 days in order to receive it. He then comes home and rests for 2-3 weeks and then goes in again for another lot. If it does what it says on the tin and radically reduces the tumour then its all systems go for the stem cell transplant. He is then in hospital for 4 weeks and in isolation for that - our heads are spinning. This all takes place from 9th August, the day after his 50th birthday ! I have had some terrific support from people on this site - many thanks Jo (sleepy-jo) which has helped me enormously to get my head around this. This site has been invaluable.

Latest in my world!

2011-07-03T08:51:10Z

Ok, so here is the latest. After reaching no remission in 3 years despite various concoctions being injected into my husband he is now going to receive Donor Stem Cell Transplant in anticipation of and I quote the oncologist here "a complete cure"!!!! He goes into hospital in August to have Eshap chemo, he stays in for 5 days and then comes home for 2/3 weeks then goes in again for another 5 days and has another lot. After this stem cell transplant is organised hopefully using his sisters stem cells. We know nothing about how he is going to feel, can he have visitors when in isolation and if anyone can help me with this I would be extremely grateful as we can be forewarned and forearmed. He is extremely scared and sad and without information I cannot help him. We were blindsided by this news on Thursday, expected more chemo but not stem cell.

Mis-Diagnosis!

2011-05-26T17:33:10Z

Ok, ive got to get this off my chest. Everyday I go on this site and everyday I read of a person being diagnosed with a terminal form of cancer - in most of these cases its primarily terminal because the GP has failed to diagnose earlier. Had some of these cases been caught earlier some of these lovely people would survive. Only today a young mother in the Daily Mail was mis-diagnosed for months! with migraines only to be told many months later after collapsing she had a terminal brain tumour. This has got to stop! I feel so strongly about this, in this day and age it should not be happening. Why dont Doctors test for worst case scenario first and if thats all ok then you can administer the paracetamol! Whew! rant over!!!!!

Sad Day

2011-04-27T14:47:53Z

Im having a sad day today - I feel incredibly guilty about this as Im only the carer, it is my husband that is dealing with cancer not me! I could barely get around the supermarket praying that no one spoke to me in case i burst into tears. I then rushed to my car and then sat and sobbed all the way home. I just dont know whats wrong with me. Sorry folks, I just had to get that out there.

Scans Reviewed - Outcome not as expected!

2011-01-25T09:00:37Z

Well we reviewed my husbands scans yesterday after 2 year ritux maintenance therapy and the tumour in his abdomen had gone! but a new one around his right kidney had appeared!!! whats that all about?????? Nobody knows what to do about this and the Doctor is going to discuss these findings at a case meeting next week to pull other doctors brains. This is all a bit unnerving to me someone taking control would be nice.

Help Needed!

2011-01-19T16:55:05Z

Hello everyone, I just wanted to pick your brains. My husband has follicular lymphoma and has just finished 2 year maintenance therapy of Rituxamab and had scans on Friday and results due Monday 24th. However after 3 years of dealing with this we (both of us) have come to the conclusion he is not dealing with this so can anybody recommend counsellors? I am going to check with the hospital in London on monday and ask their advice too but I am not enough now, I feel I cant reach him I think he needs professional help. xxx

Finished 2 Year Maintenance Therapy woohoo!

2010-11-23T16:32:37Z

My husband finished his 2 year maintenance rituxamab therapy on 28 October and is due for his scans on 14 January and then the dreaded review and lets see what this cancer is doing meeting with his oncologist. I have stopped worrying in the interim because it is exhausting and not worth wasting the precious time. I shall now take my lead from my husband and not worry until we are given something to worry about then he will worry and I will become superwoman and take control. Will keep you posted as to the result. Love to all, keep up the fight xx

Last Ritux and then scans Husband now scared as to what they will find!

2010-10-18T12:23:05Z

Its fast approaching my husbands last Ritux treatment (28th Oct) and then the following week he will undergo PET and CT scans to see if the Ritux has done its job. He is very scared, isnt talking at all about anything really just quite withdrawn. I have tried to engage him but I really dont know where to go with this. I have told him that from the information on this site and blogs and forums that you lovely people have posted the outlook doesnt seem to be as grim and there is every possibility that the Ritux has worked and controlled the lymphoma tumour in his abdomen and he could even be in remission. He's not convinced or feeling positive at all. Now unless there is something he is not telling me I am at a loss as to how to deal with this. Can anyone help?