This topic contains 43 replies, has 21 voices, and was last updated by 
Lolly 8 years, 9 months ago.
Hi all
I’m really worried, Colin is on his thirst type of treatment. Has had the melphalan and has been in hospital since last Friday night. His immune system has gone down to 0.00 and they are giving him gcsf to stimulate it but to no avail, he’s had a few temperature spikes but the last couple of days his temp has been 38.1 ish and he has the most blinding headache and a sore head. They’ve done all sorts of blood cultures etc but so far nothing has turned up. He’s in this cycle of antibiotics, his third type but still not bumping up on the immune syste. He’s having platelets a lot and has had two bags of blood.
It’s all very grim. Is this normal after a whack of melphalan, this feels worse than the SCT. At least we knew he had stem cells to fall back on and had only had one lot of chemo rather than three.
Any information gratefully received,
Vicki
Hi Vicki,
The Mephalan is there to destroy the MM and unfortunately it is non dicriminatory so does literally destroy the good cells as well. There is not a lot that can be done, it’s down to the medics now and Colin. Sorry I can’t be more positive, you just have to sit with it and I expect the medics are doing their bit as well.
Hi Maureen
Thanks for your message. I haven’t got the hang of doing messages so I thought I would post here. Firstly I did get to the wedding- which was lovely- but very odd going without colin. I had very mised feelings about going but didnt want to let them down. Colin was fine with it.
Colin is still in hospital. Last week was horrible- he was running temperatures, had the shakes and even now I don’t think they know what the root cause is. They can him in case he had sinus issues due to the headache, did the chest again in case they missed anything, nothing in the ear. They even thought it might be shingles but there is no rash- not even now.
AS we speak with headaches are gone, he feels tired and apparently his infection marker is up- but with no temperature, Over the last few days its been between 36. something to 37.4. He is still in hospital. I am very worried though as the immune system still hasn’t come up. I don’t know what that means. They are doing a bone marrow assessment some time this week. I am hoping and praying the treatment has worked and maybe his system is just a bit sluggish. However in my heart I am very concerned as its not moving even with the GCSF.
How is Ian doing 🙂
If anyone has any experience of this Id be very keen to hear!.
I am so worried that Colin will give up if this treatment isn’t working. Also how can there be any options if he doesn’t have an immune system!
Sorry to go on!
Vicki x
Hi Vicki
I hope Colin’s infection levels will fall soon but good that his temperature is normal. It must be very worrying for you and I hope you have support. The hospital didn’t find out the cause of Ian’s infection either.. Melphalan is a very strong chemotherapy and it will take time for Colin’s bloods to get back to normal. Ask the consultant about the next treatment and let him know your fears or phone the myeloma nurses.
Ian is doing well except that his neutrophils were only .09 and white blood count was low. He is being monitored weekly until they improve. Last week the clinic was running an hour and a half late. We go tomorrow so hopefully we won’t have to wait so long as we have been given a later time.
I will pray for you both and hope Colin improves and gets home soon.
Maureen x
Hi Vikki
As already said- Melphalan is very powerful, hopefully the normal cells will come back, I had 4 months of GCSF when I started pomalidomide as it knocked out my bone marrow and mm and immune system… Hence all the infections …. I think I’m ok now, but then , what do I know.
Hoping that Colin and the medics get it all right, chin up and keep going
Love Helen
Hi Helen and Maureen
Thank you Maureen. I hope that Ians bloods improve soon. Is he well in himself? Sometimes its a slow burn isn’t it. Apparently blood cancers are very complicated (I guess they all are!) but I so hope that Ian will perk up soon and theres a long long remission.
Helen thank you so much for this post, You really boosted me up. I also read it to Colin who I know felt encouraged as he mentioned it several times at the hospital this evening. He’s had the bone marrow assessment today so I do hope we will get some good news tomorrow. And being greedy a boost in the neutrophils!!. Colins seems to drop off to sleep a lot- do you get tired? I get the impression that you do lots of things- what with your holiday home etc. Colins like a wet rag (his words!!). We havemt got anything to measure this by. I hope that this last treatment has hit the MM- we can live with the immune system taking a time to come up. Motivation and positive thinking is the key- both on our shopping list but short on supply!. How are you doing generally Helen. Are you on Pomalidomide for good? What worries me is that the consultant who had a bit of an iffy bedside manner is being really nice to Colin- that worries me……
All the best
Vicki and Colin x
Hi Vicki
I’m ok, I can’t decide how I realy feel..I look well! But I’m not as good as before, less sociable, more grumpy- if that was possible – I’m very uncomfortable a lot of the time, not enough to increase the painkillers but miserable. My bloods today were ok so I’ve started cycle 9 of pomalidomide, which I will be on until it stops working…. I’m hoping for many months like Andy! So my bone marrow is holding up, which is good. The fact that the drug is working makes me feel I should be able to do more but the drug effects are inescapable and toxic. There is much to do in the holiday cottage, I do bits but get very tired very quickly, I try to do as much as possible but it’s much much less than before, but I am still here and my quality of life is good really, no sense of smell or taste and not feeling my fingertips and feet permitting!
I hope Colin gets over this hump soon, he’s like the rest of us- just keeping going but with very little energy to do anything else, and that makes you feel fed up and bored… Lots of mixed emotions and fears.
That’s a right dexamethasone ramble! You can tell its a dex day!!
Hang in there girl!
Love Helen
Hi Vicki.
Sorry to read about Colin’s woes. When I have my regular stays in hospital at the beginning of every year, it seems that way anyway, with high temperatures and high infection markers, CRP I think, they almost never discover the cause. You can also have infections without a high temperature – something I learnt recently.
As you may know I’m on my fifth line of the different treatments available, only two have worked to date, so there should be more options for Colin to move on to. Melphan has been mentioned as a future option for me as well as Bendamustine and I know they are harsher drugs to tolerate and a bit less focused. The first cycle of any treatment is usually the worst to cope with the because your body isn’t used to the drugs. As we know everyone reacts differently to them too. I am finding Pomalidomide easy to get along with whereas Helen has lost some of her senses. 😯 I had all those troubles with Revilimid including being neutropenic nearly all the time I was on it!
Hopefully Colin will adapt to the melphalan and he cope with it and the end result he gets into remission however they measure that because I don’t know!
I started my 20th cycle of Pomalidomide yesterday so I’m a few ahead of Helen 😉 and we’re off to Belgium for a few days on Friday.
Every day is a gift.
Love Andy xx
Hi Vicki & Colin
I’ve just returned from holiday ( landed @ 1am) & just popped on here to see how you are!
It’s funny how this community evolves like an extended family isn’t it? I’ve been away since the 17th June but have been thinking of you & wishing you well . Although I have not yet needed treatment, by reading posts on here I am starting to try to understand how difficult it is for all concerned.
Sending love & hugs,
C xx
Dear All
The worst seems to have happened. Colin had a bone marrow assessment on Tuesday night as his immune system still wasn’t doing anything. It revealed that his bone marrow was empty of everything good- leaving behind some myeloma cells. Effectively the treatment hasn’t worked. Without the hope of his bone marrow recovering so they could try pomalidomide they have said thats it.
They told us on Wednesday that its unlikely for the bone marrow to come back up to try treatment and they have given Colin ‘months’ to live but sooner if he gets an infection. we re trying to be positive in the vain hope that the slim chance of his bloods recovering happens, but we are told its unlikely. Preparing ourselves for the worst.
Colin feels reasonable in himself but they won’t let him out of hospital; its getting him down, reason being is he keeps spiking a temperature in the mornings, of 38.1 in both ears and then it stays normal all day. They tried putting him on tablet antibiotics but his temperature went up so back on IV. Has anyone else been in this position.
The overall picture is grim.
Vicki and Colin x
Dear Vikki
It’s the words you never wanted to hear and I’d like to just reach out and give you both a hug. There is nothing else I can say, it is the news we all dread. I hope Colin can get home soon, so you can at least get to grips with this bombshell in the comfort of home.
With much love Helen
Vicki, I am so so sorry to read your post, as Helen said I think that we all dread hearing what you have both been told. I truly hope that you can get Colin home to familiar surroundings. My thoughts and prayers to you both.
Regards
Tony F
Vicki what a worry for you and Colin. I do hope you are able to take him home, if that is what he wants, as it is must be very depressing being in hospital. Your sad news just brings it home to all of us, how precious the days are when we are in remission. We must try to enjoy every minute of every day, as we will all face what you are dealing with one day. Some of us sooner than later, unfortunately. My thoughts are with you both…treasure every second together.
Carol
Oh Vicki
I am so sorry for you both and hope you have lots of support and I that Colin can be at home soon.
Ian is doing well, neutrophils now at 1.3 and I pray that his SCT has worked as there are not many treatments left for him.
As cygnet said this community is like an extended family and I feel the same. We started this myeloma journey around the same time and we have lost a few friends along the way.
You are both in my thoughts and prayers.
Love Maureen x
Really sad to hear about your predicament. Just remember it’s not over until the fat lady sings. Who knows what’s around the corner. Is there no chance of a donor or does he have any Stemcells left that they can implant? Sorry if I sound a bit thick but sometimes solutions come from asking dumb questions.
If they are certain that nothing can be done for Colin then take him home so that at least he can have a bit of time with you away from hospitals and medics.
We are both thinking of you both.
Richard and Stef
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