[TinaParticipant]

Hi Debs,

If the TENS machine works for you and you consider having one for home use I have one that you can have.

Good Luck

Tina

[TinaParticipant]

Dear Min,

My heart goes out to you. I know only too well how you must be feeling especially when your darling Peter was taken from you so unexpectedly. As Eve says Peter probably would not have known what was happening to him and now at the very least you may be able to take a little comfort that he is free from pain.
Trying to make sense of it all will be impossible and painful right now, but I am sure you shared Peter's strength and he hasn't left you completely as he will be in your thoughts, dreams and everything you do.

God Bless

Tina

[TinaParticipant]

Hi Debs,

I often think of how you are and have wanted to give you a call but have lost your number.
Your symptoms sound familiar but unfortunately PN with Velcade is pretty common but a bu**er to deal with. Sounds like Gill's suggestion of Coenzyme Q10 is certainly worth a try, Patrick tried Gabapentin without success, he used my TENS with no positive result and took up to 180mg morphine a day plus oramorph for breakthrough pain. It's definately a good idea to see the Macmillan Nurse they seem so much more switched on to pain relief.
I will say that when Pat stopped Velcade treatment The PN pain dropped off pretty quickly.
I hope the pain clinic can find something for you.

Best Wishes

Tina X

[TinaParticipant]

Hi Gina,

Sorry the Velcade is not working for Mum, like Susannah Velcade was the only treatment that never worked for my husband Patrick. By the sound of it your mum will be having a blood transfusion soon which will give her a boost.
I hope new treatment is sorted soon, your mum sounds like a strong lady.

Best Wishes

Tina X

[TinaParticipant]

Hi Sue

Glad to hear Michael is back home but sorry to hear you his treatment may be compromised due to the low neuts and platelets. I believe the management of platelets will be a priority over anything else even if the trial cannot continue. Can't Michael have Bendamustine outside of the trial due to his curent circumstances? Patrick also had low counts but the consultant pressed on with the Bendamustine with good results.
There is still Pomalidomide and other trials coming up so try not to worry too much, enjoy each day together and stay positive

Look after yourself

Tina XX

[TinaParticipant]

Gaye, God Bless You and may you rest in peace. I knew you would have only had a week or two left in this life and hope your last breath came softly.

Although I was expecting this news I was overcome with tears and taken back to the day my darling husband was taken from me. – what a lovely person you were, we will all miss you.

Love

Tina

[TinaParticipant]

Dear Sarah,

I am sure you found it very heartwarming having so many people at the funeral to bid a final farewell to Gordon. I am so glad you have family around to support you and as Bridget says make sure you take care of yourself. Gordon is now free of pain and all the angst that this b**d illness brings.

Strength and love

Tina X

[TinaParticipant]

Dear Sarah,

I was so very sad to hear of Gordon's passing. At this overwhelmingly difficult time try to take some comfort in knowing that he is at peace now and free from pain. He will never really leave you, you will hear his laugh and see his smile, remember his words and feel his love.

Thinking of you and your family

Tina X

[TinaParticipant]

Hi Sue,

Brilliant!!

Yes, the key is recognising the symptoms of an infection and getting to hospital as soon as you can. Unfortunately this may happen again with low neutrophils but best to be prepared.

All my best wishes

Tina X

[TinaParticipant]

Dear Gaye,

I was thinking of you only yesterday and here you are. I completely understand your decision and hope you are at peace with it, the hospice will look after you I am sure.
If you would like to talk to me about anything including end of life drugs etc please don't hesitate to contact me at pa.davis@virgin.net.

Strength and hugs

Tina X

[TinaParticipant]

Hi Sue,

I am thinking of you and Michael and know how you both must be feeling. Please don't despair IV antibiotics work wonders and together with a bit of luck Michael will be home soon.
Sending you strength and hugs.

Tina XX

[TinaParticipant]

Hi Dai

I am truly shocked at what I am reading, I just can't believe how you have been treated!
Whenever there was the slightest "worry" Patrick had instant access to the Haematology ward or they would be asked to come in straight away to see the consultant who always sorted treatment immediately.
Your post particulary raised an alarm in that Patrick had a painful swelling on the back of his calf which was thought to be a DVT. After two ultra sound examinations the results were inconclusive. It was not until about six weeks later, as the swelling was getting bigger and more painful that it was visually identified as an infection. It was aspirated and was found to be a very aggressive infection which by then had taken hold as at that time Patrick was very sick.

You are right to make a stand – they need to make you a priority!!

Best of Luck

Tina XX

[TinaParticipant]

Hi Sue,

How did you get on Yesterday? Hope it was a positive visit. When I think about it Patrick did have some sleepy days but you are probably right in thinking it could be combination of low red cell count and all the treatments Michael is having.
Hope he is feeling little better.
Regards
TinaX

[TinaParticipant]

Hi Susannah,

The PICC line is similar to a Hickman in that it is used to take blood and give chemo etc. It is inserted into a vein in the arm usually just above the crook in the elbow. This is done under a local anaesthetic under x ray guidance. A very small tube is inserted into the vein and guided up into the chest area. I was with Patrick during the procedure which was straight forward, quick and he found it quite painless. The end of the tube is capped of into three sections and secured with a similar dressing to a canula. The area is checked for signs of infection on a regular basis. Well worth having one.

With regards to the bendamustine – I do not recall Patrick being tired and he continued to go to work every day. Platelets were low as well as neutrophils so regular transfusions were required.

I don't mind any questions you may have as I am aware that Patrick was further down the "road" that all the people on the forum and I may be the only person who can answer your questions.

The very best of luck to Michael

Tina

XX

I so wish the PICC

[TinaParticipant]

Hi Susannah,

I sincerely hope the Bendamustine works for Michael and he doesn't suffer too many side effects. Patrick's infusion only took an hour- guess the time difference must have something to do with the trial.
Have you thought about suggesting a PICC Line for Michael? I really regret not pushing for this for Patrick as it was an almost painless procedure and avoided the serious pain and anguish he suffered due to his collapsed veins.

Love Tina X

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