Hi Dai
Good to read your update after seeing you and Janet at the clinic Monday morning. Angelina is right, I think we do have an excellent team at Nottingham. Having heard stories from other people, on here or elsewhere, I'm very impressed with how well they respond and deal with situations that arise, or questions I ask. Good luck with the scans and radiotherapy. With any luck, there'll be nothing to see… the case of the disappearing tumour strikes again!
As for me, I start the whole stem cell harvest/transplant process on 9 June, with the insertion of the Hickman line, a biopsy and the initial high dose of Cyclophosphamide overnight – minimising the number of hospital visits means I'll have a full-on time of it, but get it over in one go. The harvest should take place on 20 June and transplant date yet to be confirmed, but probably going into hospital on 4 or 11 July. It's come round so quickly, but I guess that means all the quicker to reach remission, with any luck.
Hope Janet's knitting project is continuing happily… more focus on knitting, less on you has to be a good thing. 🙂
My next clinic visit is 27 June. Maybe see you there again? LOL!
Jet
Hi Gina
I'm sure it's been explained to you/your mum that the tiredness and breathlessness come from anaemia which myeloma causes. I am nowhere near as drowsy as I was in the early weeks/months, but still have occasional lapses of energy. If I just go with it, I can quite enjoy the melting feeling of drifting off on the couch. Perhaps if your mum sees it as a positive thing – part of the healing process (our bodies do so much healing while we sleep) maybe she'll be less concerned about it…?
Jet
Hi Liz
While I can see that everyone on this discussion forum is so very helpful and supportive, I would say to always contact the nurse/doctor at the hospital when you have concerns. They're there for you as well as the patient. I think in many ways it's harder being the carer.
I have had a couple of uneasy moments when I've been able to call and get reassurance or an explanation for things that I've experienced, like the leg pain you mention. At the Nottingham hospital, they give out a phone number, bleep and pager so patients can contact someone at any time. I really think asking the medics is a better route than asking the patients. And knowing you can call at any time means you don't always feel you have to.
As for broken bones and fractures, when I started on the Myeloma XI trial, they did a full skeletal survey, i.e. x-rays head to toe. From those they could determine my risk of further breakages. Even though I fell off my bike last week, I had been told that the risk of breaks/fractures was the same as a "normal" (non-myeloma) person. Knowing that, I didn't worry too much when I fell. It might be worth finding out what your husband's fracture risk is, if they know. That might help put one bit of worry to the side.
I hope the pain goes soon and you get some useful answers.
Good luck
Jet
Thanks for that, Jo.
I've asked my kidney consultant for his opinion, as I know bicarb is high in salt, which is obviously not good for kidneys. Also, what I've read about it in terms of helping kidneys, is about stopping progression of the disease, but not reducing it. And my kidneys are already improving from the improvement of the myeloma and calcium levels going down to "normal", so on that count it may not be useful for me, but I still think in terms of changing the pH balance of my body, I'd like to try it if he doesn't have an issue with it.
My friend just takes bicarb in a glass of filtered water, with some turmeric thrown in for good measure. She follows it up with a glass of plain water, to take the taste away, I think.
As for the turmeric, I did buy some capsules from a health food shop, but they're expensive, so then I bought some empty capsules off ebay and filled them myself with turmeric spice from a normal food shop, but you end up with yellow hands. I'm thinking I might try my friend's way, but with all the tablets I take and my struggles with eating and taste, I'm reluctant to shove more unpalatable things down me.
I think you could up the dosage on the Vit C, if you wish to increase your antioxidant input. Apparently, you can take up to 6gr a day without any ill effects. I take 2 x 1gr caplets. They're huge, but go down ok. I'm also taking Vit B complex and chlorella, as chlorophyll is supposed to be good against cancer cell growth and acts as an antioxidant in the body.
Good luck!
Jet
I suggest being kind to oneself and taking it easy be continued forever, not just a while… 😀
I am so sorry to hear of your loss.
I don't know if this is helpful to you at all, but I would like to say that I am on Revlimid on the XI trial and although I've had some really unpleasant side effects from it, in fact I hate it – it is actually working on the cancer for me.
However, when I first got the tablets, I dutifully read all the patient information leaflets in each box and the one for Revlimid had the longest list including just about any possible symptom imaginable… they're even in groups of Very common, Common, Uncommon and Rare side effects, including death!
I did feel well informed, both by the team and by the written stuff and felt I had a choice, but it wasn't a great one – take drugs and potentially live for 10-15 years or don't and probably have about 3 months or so. Ultimately, from what you've said, it sounds like it was the myeloma rather than the drugs that affected him. Sorry if I got that bit wrong.
Also, if he'd not taken the trial, he'd have been on Thalidomide, which also has a very long list of side effects. I think once you start taking drugs, you're open to anything and we all potentially respond differently.
I'm generally quite flippant about it, because I recognise that we don't have very much control – nor do the doctors – they're just doing what they think is the best possible. But for the people who lose someone, either to the disease or to a horrendous side effect, it really is not funny at all. My thoughts go out to you.
Jet
Hi Bubbles
While I can see that there are a lot of very supportive, helpful people on this site, who will do their very best to answer queries and share their own experiences, I would really strongly recommend that you and MIL ask as many questions as you can think of, of your doctor/consultant. They really are the best people to explain what's happening and why.
I don't know what your medics are like, but I have found my consultant and in particular the specialist nurses more than helpful and supportive and willing to answer all sorts of questions, from purely factual medical stuff to the more personal/emotional things.
Good luck!
Jet
Hi Jo
Thanks for the nod towards Sodium Bicarbonate.
A non-MM friend (who's done a fair bit of research as she has lupus) mentioned it the other day on the subject of changing one's pH balance to a more alkali envrionment. An alkali, low-sugar and oxygenated environment is very anti-cancer, so for MM patients with kidney problems, it would seem that bicarb is a good (and easy/cheap) way to go.
I also take turmeric each day, along with 2gr of Vit C, as it's an excellent anti-oxidant. Can't harm and may do good.
Sorry Clucky, for taking over your post, but maybe it could be useful for your husband too.
Jet
In case anyone wishes to know, my friend Pete successfully completed the marathon, hot and slow he says. So far he has raised £280.00, but I think this will be split with The Prostate Cancer Charity as well as Myeloma UK.
His Just Giving page is still open.
You kept your eyelashes?????
Wow! That's exciting. I was thinking of not buying a wig for my head, but maybe some of those 60's style huge spidery false eyelashes – just to make a point. Maybe I won't have to…?
Sitting here laughing… kinda!
I have the absolute opposite weight problem…
Throughout January, prior to being diagnosed, but unknowingly having hypercalcaemia, I had no appetite, felt nauseous and could barely eat a thing. I lost 14kg – that's 30lbs.
Since my diagnosis, I have a friend living with me who puts a lot of effort into cooking, feeding me and encouraging me to eat, so I am eating, but not putting on weight… and not really enjoying food to be honest – eating is a chore these days.
All my trousers look like empty sacks of potatoes on me. When I look in the mirror, I'm positively scrawny. I've gone from a lovely round voluptuous 14 to a flat-bottomed, smaller chested (was G, now DD) size 10. Where's my bottom gone???? My skin's also a bit too big for the flesh in it, so it looks saggy like an older woman. I'm only 49!!!
I know a lot of women would think that was a dream come true to drop 2 sizes, but I really liked my body before and now having to get used to this new one which I don't much like and like you've said it makes me feel less confident about wearing nice clothes and going out looking good. It's like I have to get to know my body all over again.
On the plus front, I do look great in leggings now. And I found a great DD push-up bra which makes a wonderful cleavage. And yesterday I finally bought some trousers that actually fit… even if they don't replenish my bottom.
Hi Sandie
From my own experience, the radiologist's report will not be so necessary for diagnosing MM or not because of lytic lesions – they are fairly obvious. If you have a look on Google images, you will see. So I'm sure the haematologist will be able to tell immediately if it's MM or not.
However, what the radiologist was able to comment on was the likelihood of further risk of fractures, etc.
Hopefully and if they're all doing their jobs well, the haematologist may well have the report in time for your appointment.
Good luck!
Jet
Thanks for that snippet, Clara. Very supportive!
I think the experience for patients and those who love them is necessarily very different, so we all do what we need/can to make it work best for each of us/them.
Good luck next week.
Best wishes
Jet
All the time, Bridget! This whole experience is an ODD thing, innit?
I say just notice and celebrate it – it's what makes us so special! LOL!
Jet
Aha!
Thanks to Dai, Debs and Min for clarification. To be honest, all these figures are a bit meaningless to me and I've decided not to get too bogged down with it all. When the consultants/nurses smile and say things are going in the right direction, then I smile too. That's good enough for me for now.
The rest is just a matter of managing my energy, pain and happiness quotient on a day-to-day basis and making the most of it when I feel good, which at the moment is most of the time. Just returned from a very chilled Tai Chi class, so in a very good space.
Not looking forward to the whole SCT thing, but if it puts me in remission for several years, then it'll be worth it.
Feeling happy and hopeful (Dexy day today! :D)
Jet
