Myeloma Forum | valgrebezs | Activity https://forum.myeloma.org.uk/members/valgrebezs/activity/ Activity feed for valgrebezs. Sat, 11 Apr 2026 14:18:44 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 2b39193e0b0507d31fec61f940d8da4c valgrebezs started the topic Vitamins etc in the forum Treatment https://www.myeloma.org.uk/forums/topic/vitamins-etc/ Mon, 02 May 2016 06:17:34 +0100 Hi from Val, Can anyone tell me what kind of supplements or anything ele they take after SCT to try to rebuild their immune system. thank you

]]> 11ed74b6ea67a8297c68b1d3ee87bdb3 valgrebezs replied to the topic Advice most appreciated re clinical trial or no clinical trial in the forum Newcomers https://www.myeloma.org.uk/forums/topic/advice-most-appreciated-re-clinical-trial-or-no-clinical-trial/#post-127810 Mon, 02 May 2016 06:13:07 +0100 hello Colin, big decision for you.  My husband Peter dx Oct2014, had radiotherapy,6 sessions then 12 months of Chemo, and an SCT last December 2015.  he tolerated the Chemo really well but did have 2 bouts of Pneumonia in that time. SCT went OK but really bad chest infection even after that. Was told in Feb that he was now in Remission. he was o…[Read more]

]]> f8065f4a6d76f5afb6ccae7f647b2bf1 valgrebezs started the topic After SCT in the forum General https://www.myeloma.org.uk/forums/topic/after-sct-2/ Sat, 09 Apr 2016 06:52:47 +0100 Hi lovely people with a fighting spirit.  This is from Val ad I didn’t get even one reply about travel insurance, oh well, I found my own.

Peter had SCT in early December, was declared in remission in Feb, hair growing back etc. during his 16 months of treatment radotherapy 6 sessions and 12 months of chemo he also had Pneumonia once and a very…[Read more]

]]> fc6f3db9087a17133c70ebe2877a0969 valgrebezs started the topic Travel Insurance after Myeloma in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance-after-myeloma/ Thu, 24 Mar 2016 15:59:26 +0000 Hi from val.  I haven’t posted for quite a while as my husband Peter’s treatment took all my time. 12 months of Chemo including 6 sessions sof Radiotherapy.  He has been in the Royal Marsden in London, who were brilliant.  STC in early December followed by a miserable time with after effects, however he was told in early January that he was in re…[Read more]

]]> 5a5ce7855a150b7e032a9e396474b13d valgrebezs started the topic Precautions after SCT in the forum General http://www.myeloma.org.uk/forums/topic/precautions-after-sct/ Sun, 13 Dec 2015 06:40:53 +0000 Hi Everyone and Happy Sunday. My husband Peter has been home a few days after 4 weeks in hospital having his SCT.  He has started to eat a little but is very tired but OK otherwise.

We have  reserved a puppy for collection in 8 weeks, he is a Cockapoo, they are lovely and expensive! I have a friend who is a Myeloma Nurse and she has asked if I h…[Read more]

]]> ec86aa15ea37812680f3063b76a16764 valgrebezs started the topic Home after STC in the forum Treatment http://www.myeloma.org.uk/forums/topic/home-after-stc/ Thu, 10 Dec 2015 06:02:45 +0000 Husband Peter coming home today 4 weeks after SCT.  Any extra precautions I should take with house? Thanks Val

]]> 5f32c2fb3d7cb1e627d9e97722a71622 valgrebezs posted an update: Hello, everyone after a long time. Peter's beginning of stc […] https://forum.myeloma.org.uk/activity/p/41678/ Sun, 01 Nov 2015 09:29:56 +0000 Hello, everyone after a long time. Peter’s beginning of stc at Royal Marsden was postponed as he was rushed into hospital last Tuesday night. he has had 6 doses of Radiotherapy and 12 months of Chemo and generally he is fine. ?/chemo didn’t give him any problems at all.,He had Pneumonia at the outset and was in for 10 days. Now in the middle of…[Read more]

]]> 0 5038f7b345b800b55e986cbda4502292 valgrebezs started the topic My husband peter in the forum Treatment http://www.myeloma.org.uk/forums/topic/my-husband-peter/ Fri, 17 Jul 2015 08:01:02 +0100 Peter was admitted to the Royal Marsden in London Uk yesterday. .Had the line inserted and now is on intensive chemo…..24/7. Was already for his sct preparation and the Marsden found more cells affected. after 8  months of Chemo. so 2-3 weeks in here. so glad they found it. But scared. How is he going to be? 24/7 Chemo……………nightmare.…[Read more]

]]> a10a855dc703265a0d4c85639c98524b valgrebezs posted an update: Well, Peter transferred to Royal Marsden from local hospital […] https://forum.myeloma.org.uk/activity/p/39822/ Mon, 13 Jul 2015 03:44:06 +0100 Well, Peter transferred to Royal Marsden from local hospital where has had 8 months of Chemo and few radiotherapy. Very happy with Consultants there and all staff, just lovely. BUT….Marsden have done another bone marrow biop and they have found cells that were ‘hiding’.. Poor Peter now has to be admitted on Thursday for 2 weeks intensive Chemo.…[Read more]

]]> 0 4b2d8c2cf776b05d6349c841e320cef7 valgrebezs replied to the topic Children checked for this awful disease! in the forum General http://www.myeloma.org.uk/forums/topic/children-checked-for-this-awful-disease/#post-122705 Sun, 21 Jun 2015 09:40:11 +0100 Thank you Jeff, will

pass this on to my husband. xx

]]> b1fa23cd1a41e98cb3ecd2be291e391e valgrebezs started the topic Children checked for this awful disease! in the forum General http://www.myeloma.org.uk/forums/topic/children-checked-for-this-awful-disease/ Sun, 21 Jun 2015 07:35:54 +0100 Hi from val, do we need to get our adult children checked? My husband has an adult boy and an adult girl.  I have an adult girl? any answers please. Val xx

]]> 7c8e518fb7b4cd5ffd920904524fac3a valgrebezs posted an update: Hello, not posted for a few weeks, but read regularly.Chemo […] https://forum.myeloma.org.uk/activity/p/39375/ Fri, 12 Jun 2015 11:08:03 +0100 Hello, not posted for a few weeks, but read regularly.Chemo has finished and Peter has been transferred to the Royal Marsden in Sutton. 6 sessions of radiotherapy and 8 months of Chemo. It really is a long haul journey. So now, we wait…..SCT scheduled for whenever, meeting with Transplant team next week. Although we were there all day, we had a…[Read more]

]]> 0 66f62c9a5fe397a7c5fcbef6cd279347 valgrebezs started the topic Recommendation and advice in the forum Treatment http://www.myeloma.org.uk/forums/topic/recommendation-and-advice/ Tue, 17 Mar 2015 17:05:02 +0000 Hello once more from Val.   peter has been taken off Velcade due to very severe neuropathy. For the past few weeks. Yesterday he saw 2nd in command, she told him that they would work out an alternative, so no chemo at the moment! She also said his paraproteins were down to 10. Then she said they wanted to get his figures down and move on to the…[Read more]

]]> ad2d4897db37997e58c165181e475f78 valgrebezs replied to the topic Chemo and more. in the forum Treatment http://www.myeloma.org.uk/forums/topic/chemo-and-more/#post-121184 Sun, 08 Mar 2015 14:22:33 +0000 Hello and thank you so much for your replies. Mrs ‘Zombie’here as had no sleep last night as husband was in agony.So ‘Zombie’ I am today.Just for info, he has a lump on his back wich has reduced, but not enough. Consultant doesn’t talk much about paraprotein levels and I have taken
the advice of all of you. Written letters to Consultant which…[Read more]

]]> a6a473de4c8587f33a4a14eeb6bfed3b valgrebezs started the topic Chemo and more. in the forum Treatment http://www.myeloma.org.uk/forums/topic/chemo-and-more/ Sat, 07 Mar 2015 07:31:38 +0000 Hi, sorry to post again but I had no replies from my posting 2 weeks ago. So will try again.
My husband has to have extended Chemo when he should really be finished in 2 weeks time. They say his body is quite resistant to Chemo! not heard that one before! We were all ready to make plans for SCT so quite shocked. He has also had Radiotherapy, 5…[Read more]

]]> b1e942213d95fabc6c263e2143076032 valgrebezs started the topic chemo in the forum Treatment http://www.myeloma.org.uk/forums/topic/chemo/ Thu, 19 Feb 2015 15:08:56 +0000 Hi brave friends, love to all of you fighting this awful disease. Just came back from the Consultant
and found out that Peter’s 4 cycles of chemo haven’t shrunk his tumour enough so he will have to have another 2 cycles. It sounded very complicated as the Consultant said that it was more difficult when on a bone rather than inside the bone!…[Read more]

]]> fd96b8aeaae99477d2475e002b377562 valgrebezs posted a new activity comment https://forum.myeloma.org.uk/activity/p/36717/#acomment-37644 Wed, 18 Feb 2015 05:25:03 +0000 hello anne
I will be at the Marsden in April with my husband Peter, sorry I can’t help with your doggie but maybe we can cheer each other up. You can msg me privately if you like and I could make a few phone calls for you. Love Val

In reply to - ladybird became a registered member ]]> 871fed44c2e0d38ae490da8509eef9a7 valgrebezs replied to the topic How do you help your partner, when you can't cope with things yourself in the forum General http://www.myeloma.org.uk/forums/topic/how-do-you-help-your-partner-when-you-cant-cope-with-things-yourself/#post-120582 Fri, 30 Jan 2015 04:53:16 +0000 Hello Tracey, Sorry a bit late in replying to your question but my husband Peter is the patient so I understand how you feel. He is presently in hospital with slight (slight, what does that mean), Pneumonia. Also, he hates hospitals and the boredom. Funny thing is that I can’t cry, only rarely, wish I could as it all seems to be inside me,…[Read more]

]]> 33814b01c52b63fb767160af7a2edb46 valgrebezs replied to the topic Swollen ankles, feet etc in the forum Side-effects http://www.myeloma.org.uk/forums/topic/swollen-ankles-feet-etc/#post-120571 Thu, 29 Jan 2015 16:30:52 +0000 Hello David and Thank You for your message. Peter has been admitted to hospital as he has pneumonia. not too bad but still, he’s stuck in there. he seems a,little hunched and now doesn’t seem so tall.
Good luck for everything, what a lousy illness this is. Val. London

]]> 8dada24fe4f55ac5cd01bcb04124a9e6 valgrebezs started the topic Peter admitted to Hospital in the forum General http://www.myeloma.org.uk/forums/topic/peter-admitted-to-hospital/ Thu, 29 Jan 2015 06:00:27 +0000 Hi from Val. Just returned from Hospital at 0530. Peter had breathing problems, so paramedics and ambulance at midnight and he’s been admitted. They think he has a chest infection, so where he got that from I don’t know, as he hasn’t been anywhere! Hate this illness.

]]> d21f9ca722bdb82d098f11f4b4f4f4f2 valgrebezs replied to the topic Swollen ankles, feet etc in the forum Side-effects http://www.myeloma.org.uk/forums/topic/swollen-ankles-feet-etc/#post-120352 Sat, 17 Jan 2015 17:39:44 +0000 Thank you Finn. xx

]]> 9dc15db26f49ef40d0c95aba28c828e8 valgrebezs started the topic holidays etc in the forum General http://www.myeloma.org.uk/forums/topic/holidays-etc/ Sat, 17 Jan 2015 07:24:51 +0000 Mad question for you. from Val, I have posted already this morning. When husband was diagnosed in Oct 2014 we had a holiday booked for Christmas in Antigua and were finalising a house purchase in France.
I asked the Consultant if we could still go away, he laughed and said No! Shame, as I work for British Airways! Also we had to complete on our…[Read more]

]]> 405d567443266f0292a57185c1a13696 valgrebezs started the topic Swollen ankles, feet etc in the forum Side-effects http://www.myeloma.org.uk/forums/topic/swollen-ankles-feet-etc/ Sat, 17 Jan 2015 07:07:42 +0000 Hi from Val. My husband is halfway through Chemo and has had 5 sessions of Radiotherapy. Diagnosed in Oct 2014. He has really swollen ankles, feet and lower legs and worst of all his stomach is very swollen and he has never had ‘a beer belly’ before. he is to have another scan on 24 Jan. Anyone heard of this? Could it may be the steroids? Any…[Read more]

]]> d0862b27604cd77783452c5619af583c valgrebezs replied to the topic Trying to find how best to cope in the forum General http://www.myeloma.org.uk/forums/topic/trying-to-find-how-best-to-cope/#post-120173 Tue, 06 Jan 2015 07:59:24 +0000 Hi and good morning at 0741.
Sorry to bore you again. We have a Specialist Nurse who is really not contactable. A Macmillan Nurse who we thought would be more sympathetic. And questions, lots of questions!
why can’t we get some answers?
My husband is sleeping in one of our spare rooms, propped up now with pillows and he actually slept last night.…[Read more]

]]> 5a160b3b68c4d87821cebdc53a23b421 valgrebezs replied to the topic Myeloma Specialists - London/South East in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-specialists-londonsouth-east/#post-120166 Mon, 05 Jan 2015 04:46:09 +0000 Thank you Jane, Guess we are making the right choice. Val G

]]> 5c14a66bf4f02c58f4b2f11327d8b434 valgrebezs replied to the topic Myeloma Specialists - London/South East in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-specialists-londonsouth-east/#post-120157 Sun, 04 Jan 2015 07:53:55 +0000 Hello Cygnet, Sorry I have only just seen your post. First of all, there is a Marsden in London and one in Sutton. My husband is having chemo and all the initial tests at St. Peter’s in Chertsey Surrey.He had radiotherapy (5 sessions) at St.Luke’s in Guidford. But, I now want him to see a Pain Specialist
as he is always in pain and it’s about time…[Read more]

]]> af0ca68ed609919faf9e1147ea238499 valgrebezs replied to the topic Trying to find how best to cope in the forum General http://www.myeloma.org.uk/forums/topic/trying-to-find-how-best-to-cope/#post-120150 Sat, 03 Jan 2015 09:52:33 +0000 Hi Maureen,
Thanks for that, makes me feel better. Val xx

]]> f292c542273de74e5f5031875161d360 valgrebezs replied to the topic Trying to find how best to cope in the forum General http://www.myeloma.org.uk/forums/topic/trying-to-find-how-best-to-cope/#post-120148 Sat, 03 Jan 2015 07:01:02 +0000 Thank you Maureen for the information.I forgot to say that his stomach has swelled also, looks he’s about to give birth and he’s not a fat man. Val x

]]> 6e00aa6a30e7184b7b9d09ba6656a9f9 valgrebezs replied to the topic Requesting information on treatment centres in the forum Treatment http://www.myeloma.org.uk/forums/topic/requesting-information-on-treatment-centres/#post-120144 Fri, 02 Jan 2015 08:18:55 +0000 Hello Kim
I too would like information on this subject. My husband has only just started his treatment, he has finished radiotherapy and so far has had around 8 chemo sessions and another today.He is being treated at St Peter’s Chertsey but I would like him to be at the Royal Marsden when it’s time for a transplant. It has been highly…[Read more]

]]> 7f0a9ac8aca1b9c6c6fe8784fceabddd valgrebezs replied to the topic Trying to find how best to cope in the forum General http://www.myeloma.org.uk/forums/topic/trying-to-find-how-best-to-cope/#post-120142 Thu, 01 Jan 2015 09:58:24 +0000 Hello Andy and Richard, it’s a very confusing journey and thanks for your replies, which explain the Dex days. Peter also has some sores on his legs and swollen ankles, is that the chemo? Val

]]> 56bb016e0c449bb58ac091e46d038a0e valgrebezs posted an update: Hi to everyone and thank you fo all your advice, It's […] https://forum.myeloma.org.uk/activity/p/36904/ Sat, 27 Dec 2014 07:22:50 +0000 Hi to everyone and thank you fo all your advice, It’s lovely to have this support as I feel that this is not quite right because of his pain. I didn’t mean your support, just that everything comes to a standstill because of the Holiday Seaext questionson and everyone is in limbo with questions. Thank you Freddie and Teresa, you have been very…[Read more]

]]> 0 eb1f5e6cdb428613defb717cfd1bb97f valgrebezs started the topic Trying to find how best to cope in the forum General http://www.myeloma.org.uk/forums/topic/trying-to-find-how-best-to-cope/ Sun, 21 Dec 2014 07:52:28 +0000 Hi, I’ve posted before but will ramble a little (sorry).  My husband was diagnosed in October and has since had 8 sessions of Chemo and 5 sessions of radiotherapy.  now it’s Christmas so don’t yet know when his next chemo is.

He is taking all kinds of medication (please don’t ask me the names) but last night he didn’t have a sleep for even one m…[Read more]

]]> 922fabee151854ddbfb029049d44c8b9 valgrebezs became a registered member https://forum.myeloma.org.uk/activity/p/36361/ Tue, 11 Nov 2014 06:03:18 +0000 0