[robert0439Participant]

Hello Again,

Just been on the nowicantravel.co.uk web site where I was surprised to see they actually had “Smouldering Myeloma” listed in their pull down menu options, which is the first travel insurance web site to have this. They agreed to cover my wife and I to include my condition, for 2 weeks in the Canaries, for £43.72 so decided to take this.

Thanks again for everyone’s feedback.

Regards,

Robert

[robert0439Participant]

Hi Everyone,

Many thanks to all those who have sent me their thoughts. I agree that it’s a matter of risk but as I am in the very early stages of smouldering Myeloma, may still do this however, I am conscious that insurance companies will always try to wriggle out of anything that they can.

I will most certainly take a look at nowicantravel.co.uk to see what they look like.

Regards,

Robert

[robert0439Participant]

Hi Robbo,

I have only had one bone marrow aspiration so far which for me, is quite enough.

I had a local anaesthetic but once the doctor started to bore into my hip, it literally felt like a hot needle so I had another couple of shots of whatever it was they were pumping into me. This was fine until they then started to enter the hip bone which as Stanley has already described, there is no anaesthetic for.

Once the doctor had started to work her magic behind me, I had a very nice haematology specialist nurse holding my hand and asking me to tell her my life story in 5 minutes which was I guess, intended to take my mind off things.  As I am sure everyone who has gone through this process already knows, it did not take my mind off anything, but just reiterated what an uncomfortable – but necessary procedure it is.

Regards,

Robert

[robert0439Participant]

Hello Tom,

Thanks again for the comments and feedback. I must admit that I had never heard of POMI-T it but then again, prior to around 2 months ago I would not have had any reason to look, but now is a slightly different matter.

I am pretty happy with my current supplement regimen and will stick with this at present, as I’m getting the majority of the supplements that you mention from other areas apart from broccoli however, my diet is vegetarian based (apart from fish), and I ensure that I eat my fair share and more of vegetables.

Not to advertise any local outlets, but Aldi do a great “super 6” fruit and veg offer at 69p each…

Regards,

Robert

[robert0439Participant]

Hi Tom,

Good to hear that your consultant said taking it, will probably not do any harm.

May I ask what dosage of curcumin you currently take?

Regards,

Robert

[robert0439Participant]

Hello David,

Thanks for your positive comments and may I say that I admire the manner in which you are managing your issue by taking one day at a time and not thinking too far ahead.

Wishing you continued good luck.

Regards,

Robert

[robert0439Participant]

Hi,

I cannot really comment on the issues of side effects, as my current “smouldering” position is just watch and wait however, if you are not happy with anything, then suggest you contact you husband’s myeloma nurse specialist at your myeloma clinic or, or seek further advice from your GP.  Also, don’t be afraid to ask questions so you can understand your position more clearly.

From my very limited experience and being new to the illness myself, I am finding that myeloma is so specific to each individual. Good luck anyway.

Regards,

Robert

[robert0439Participant]

Jeff/Scott,

Thanks again for the feedback.

I have already read with interest the story of TAB who seems to have had great success with Curcumin, but appreciate that although this seems to have worked for him, it may not work for others as Myeloma seems to be so individual.

Anyway, thanks once again.

Regards,

Robert

 

[robert0439Participant]

Hi Peter,

Thanks for your comments of support.

<span style=”background-color: rgba(255, 255, 255, 0);”>Must admit, I have not looked at anything to do with treatment as I am not at that stage yet but reading the many posts from others, the treatment does seems to have some rather harsh Side effects.</span>

it goes without saying that I hope things are well with you.

Regards,

Robert

[robert0439Participant]

Good Morning Carol,

Thanks for your valued feed back and I will certainly try and do whatever it takes to remain at my current smouldering level.

My thoughts are with you and I sincerely hope that you continue to feel better.

Regards,

Robert

[robert0439Participant]

Hi Martin,

I did a copy and paste on my last post, which did not seem to work so here goes again.

Thank you for your response as it’s nice to hear from someone in a similar situation to myself.

At my last meeting with my haematologist, I actually said that if there had been a mix up with various individuals, then I would not have been surprised, as I don’t feel any different to what I have felt previously.

I don’t drink (but maybe now is the time to start…), have never smoked and have a really good diet, and take moderate exercise. My weight is good and have a BMI just above what is considered to be normal, so even more of a shock to me when I was told the news.

With your Paraprotein levels as they are, I would not worry too much as I am told 30 is the cut off point from being considered as smouldering, to the next stage of Myeloma. Like you, my kappa light chains are pretty high at around 260ml/L however, because my lambda light chain are so low at around 1.95ml/L, my kappa/lambda ration is very high at 133, which supposedly indicates that the Myeloma is active.

I also have a low haemoglobin, red blood cell and white blood cell count. What concerns me here, is that these leave me with a lower than normal immune system and I may be vulnerable to picking up an infection. I have therefore started to take some supplements to try and boost my immune system. I am also taking some other stuff in order to try and stay at the smouldering level, which as we know is then a “watch and wait” scenario.

I am actually 62 and retired around 18 months ago so have far more time on my hands than if I was working. I have done quite a lot of research on the whole issue of Myeloma, in order to make more sense and to try and understand what drives it. There are some interesting blogs out there for people who are interested in doing this, but I can also understand other who may not wish to. If you are interested, check out “Margaret’s Blog” at the below link where she has been smouldering for many years:

http://Margaret.healthblogs.org/

I too have a fantastic wife who has been so helpful and supportive over the past 5-6 week. I have managed to keep my head up so far and think positive, but there are times when I start to slip to the dark side, but fortunately, this is not for long.

To “celebrate” my news, the first think that we did was to book a holiday, as we intend to carry on with our lives while we can and enjoy our time.

As I mentioned in my first post, I see my haematologist next Tuesday, so will be interesting to say the least, to see what has moved on my numbers etc.

Thanks once again for your comments and may I also wish you well going forward.

Regards,

Robert

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